Can People with Antiphospholipid Syndrome (APS) Have Successful Pregnancies?

by Dr. Michael Lockshin
pregnant with Antiphospholipid Syndrome

So, can people with antiphospholipid antibody have successful pregnancies?

The short answer is yes… with a couple of footnotes.

First, it depends a bit on how you were defined as having antiphospholipid antibody.

There are three different blood tests:

  1. A positive lupus anticoagulant test, a type of clotting test, if present, indicates the highest risk (for losing the baby or having another complication of pregnancy). However, it is easy to get a wrong answer in this test if the doctor or the laboratory are not familiar with it and don’t handle the blood specimen properly.
  2. A positive test for anticardiolipin antibodies raises concern only if it is very strongly positive. Our own studies suggest that even a strongly positive test, if not accompanied by lupus anticoagulant, may not be as worrisome as we once thought.
  3. A positive test for antibodies to beta-2-glycoprotein I also has to be strongly positive to be worrisome, and even then, according to our studies, may not suggest high risk.
    The worst scenario is if all three tests are strongly positive.
Dr. Michael Lockshin, Rheumatologist lupus Antiphospholipid antibody syndrome

Dr. Michael Lockshin, Rheumatologist

But don’t despair. These pregnancies are treatable. In our recent study (the largest and most detailed one done to date), pregnancy outcome was about the same as for women with diabetes, kidney disease, or poor socioeconomic conditions. More than 9 of 10 pregnancies survived, and about 8 of 10 pregnancies went to full term. Of course patients were very closely monitored and treated, mostly with a form of injectable heparin (a blood thinner). The common problems were prematurity and high blood pressure (a pregnancy complication seen in many circumstances); the problems occurred most often in patients who also had lupus.

So the answer is yes: women with antiphospholipid antibody have successful pregnancies. You have to be emotionally strong—it will be a very long nine months. And four people—you, your partner, your obstetrician, and your rheumatologist—have to have a good working relationship and understanding of the possibilities, both good and bad. Consult with your physician if you plan on having a pregnancy.

Topics: Lupus, Rheumatology
Tags: , ,
The information provided in this blog by HSS and our affiliated physicians is for general informational and educational purposes, and should not be considered medical advice for any individual problem you may have. This information is not a substitute for the professional judgment of a qualified health care provider who is familiar with the unique facts about your condition and medical history. You should always consult your health care provider prior to starting any new treatment, or terminating or changing any ongoing treatment. Every post on this blog is the opinion of the author and may not reflect the official position of HSS. Please contact us if we can be helpful in answering any questions or to arrange for a visit or consult.

Comments

Karen Doyle says:

I was diagnosed with APS in 2005 after 4 miscarriages. My OB/GYN had me inject Heparin (blood thinner) 2x a day through out my 5th pregnancy, starting at 5 weeks. It was successful! I carried a beautiful baby boy to term and delivered via planned c-section. I went on to have another baby 3 yrs later. Instead of Heparin, this time I injected Lovenox 1x a day. Again, it was successful! I carried a beautiful baby girl to term and delivered via c-section once again.

kristine says:

hi…. my cousin was diagnosed with APS early in pregnancy with her first child. She received shots/transfusion like what the MDs suggested.

She delivered 6days ago via emergenc csec – and her recovery has been slow. She has ongoing fevers and is very weak, She is currently intubated and on vent since delivery. Her liver has failed due to drug induced hepatits due o all the meds she has been on. on top of that, she also has a pulmonary infection. Her heart rate has dropped to that of a 60 year old, and is atherosclerotic, could possible have a heart attack at any moment.

its devastating and we are all heart broken at the outcome of her pregnancy. she was perfectly healthy until this pregnancy, and after her csec. We are praying that she pulls through this!

HSS on the Move says:

Hi Kristine – Thanks for reaching out. Wishing your cousin the best. For more information on APS, click here: http://www.hss.edu/condition-list_antiphospholipid-syndrome.asp

allyn alicia says:

Positive APS and lupus

allyn alicia says:

hi kristine,
i just wanna know hows your cousin doing. Hope she is ok and the baby. Please let me know. Thanks

Raymond Saba says:

Our daughter, Rebecca Saba, suffered a stroke on March 24, 2009, diagnosis: APS. She has been on Warfarin continually to maintain a therapeutic INR 2-3. At an appointment with Dr. Lockshin, April 14, 2009, he confirmed the APS diagnosis; non-Lupus factors. On Dec. 12, 2013 (3 days from now), she will undergo surgery for primary hyperparathyroidism to remove one gland. She stopped her Warfarin Dec. 8 as part of pre-surgery prep. Should she be on a bridge blood thinner? Urgent! Thanks! Please respond directly to my email address.

HSS on the Move says:

Hi Raymond, thanks for reaching out. We’ve sent your question to Dr. Lockshin.

Celeny Hernandez says:

I would like to know more about it i have anticardiolipin and lupus anticoagulant positive, i am 37 years old and i dont know what to do .thanks

HSS on the Move says:

Hi Celeny, thanks for reaching out. For more information on Antiphospholipid Antibody Syndrome, click here: http://www.hss.edu/conditions_antiphospholipid-antibody-syndrome-in-depth-overview.asp. If you are interested in receiving care at HSS, please contact our Physician Referral Service at 877-606-1555 for further assistance.

Lisa Willinger says:

I wish I had known that APA positive women are at greater risk for eclampsia and/or HELLP Syndrome.

My story:

I suffered the losses of three naturally conceived PGs (at ages 36,38, and 41) which the experts I consulted–an OB and 2 REs–told me were due to genetic defects caused by AMA/”old eggs” before finally moving on to DE IVF at their encouragement. At that point I went I BCP. to avoid another “accidental” conception and started my own support group for women considering DE IVF to help me navigate the process.

Then I had not one but TWO DE cycles cancelled prior to retrieval due to problems with the donors” health history and/or response to Stims, before donor #3 gave us the egg that became the single hatching blast my RE transferred.

Unfortunately, two days after I stopped lovenox injections (at my OB”s instructions) I came down with a severe case of HELLP Syndrome that gave me a stroke which out me in a month long coma and ruptured my liver, though my baby was born healthy.

Prior to pregnancy I was underweight, a ten year long vegetarian and life long nonsmoker in general good health. Other than infertility and repeat pregnancy loss I had no major health issues.

Now, in addition to recovering from the near fatal stroke and liver rupture I struggle with pervasive joint pain that no one has been able to successfully diagnose.

Looking for suggestions in what else might be causing my joint pain/ supplements or meds I should take. No more babies for me—we recently let our frozen embryos go and anyway I turn 49 this year and am TOO TIRED to contemplate increasing our family”s size.

Just looking for insight into what went so badly wrong with my pregnancy.

Thanks ahead if time!

HSS on the Move says:

Hi Lisa, thank you for reaching out. Dr. Michael Lockshin, Rheumatologist, says: “In a sense, your story is classical for antiphospholipid syndrome. The joint pain, however, is not. You don’t give much information about it so I can’t say very much. You do say that it has been difficult to diagnose, but you don’t say what tests have been done. It could be independent, or it could be related to lupus, or to osteonecrosis. You would have to do blood tests and x-rays to determine this.” It is best for you to consult with your treating physician. If you wish to receive care at HSS, please contact our Physician Referral Service at 877-606-1555 for further assistance.

Sara Arnold says:

Hi,

Q.. How about if I am allergic to heparin?

HSS on the Move says:

Sara, thank you for your question. Dr. Michael Lockshin says, “If you are truly allergic to heparin—it is rare, but does happen—there are other forms of anticoagulants, for instance fondaparinux, that can be used. There is less experience with these other drugs in pregnancy, and from a theoretical point of view heparin should work better. Another way of managing a pregnancy if heparin cannot be used might be intravenous immunoglobulin. For all of these things you need doctors with a lot of experience to guide you.”

Tari says:

I am seventeen and I have been diagnosed with APS. My doctors have told me that pregnancy will be difficult but doable, and I have always looked forward to having children. I take 40mg of Lovenox injected once a day. My question is; would it be easier to carry out a pregnancy in my early twenties instead of waiting longer? Would my chances of carrying a baby to term be greater if I tried at a younger age than I had planned? I am in a stable relationship and plan to marry my boyfriend of two years shortly after we turn 21 or so, so I don”t have any worries about our relationship.

HSS on the Move says:

Hi Tari, Thanks for reaching out. HSS rheumatologist Dr. Lisa Sammaritano says, “Your age doesn’t affect the risk of miscarriage or pregnancy outcome in APS. Your doctor can discuss the details in terms of what medications might be indicated for you during pregnancy; it depends on your medical history and can vary between patients.”

Kerry says:

Hi don”t know if you still read this, I too have been diagnosed with this after 6 miscarriages so to me you are lucky to know ahead. I”m currently pregnant with pregnancy number 7 and on heparin injections once a day and aspirin. Hopefully this will be a good outcome. I”m 31 now and if I had known about the risks of miscarriage I would have started trying when I was younger as still with the injections it is not gaurenteed. Not meaning to worry u, just thought I would give u my experience. But u are in a better situation than me to start with as I assume u will be given meds and monitored on your first pregnancy. Good luck. Kerry x

Janyce Canote says:

My daughter-in-law was diagnosed with this syndrome after 3 miscarriages,(although I do not know the severity of it),she was instructed to take one baby aspirin per day. She very quickly became pregnant but then had a 4th miscarriage within 2 – 3 wks. In your professional opinion & experience would you recommend she be on Heparin or Lovenox instead of the baby aspirin?

HSS on the Move says:

Hi Janyce – Thanks for reaching out. We recommend that your daughter consult with her treating physician. If you’d like to speak with a physician who researches and treats patients with this condition, please contact our Physician Referral Service at 877-606-1555 or visit them online at https://www.hss.edu/secure/prs-appointment-request.asp.

Jennifer McDorman says:

Why can Antiphospholipid Syndrome lead to premature births?

HSS on the Move says:

Great question. HSS rheumatologist Dr. Lisa Sammaritano says, “Antiphospholipid antibodies predispose to blood clot formation, which can lead to the placenta not working properly to deliver nutrients to the developing baby. However, these antibodies work through other mechanisms as well, so we do not always see clear evidence of blood clots in the placenta of a failed or complicated pregnancy. There are medication that can thin the blood and inhibit some of the antibodies’ other actions. This treatment can prolong pregnancy and prevent miscarriage for patients with APS. Its important to consult with a physician on what approach is best for you.” Learn more about APS at http://www.hss.edu/condition-list_antiphospholipid-syndrome.asp

Prabakaran says:

My wife had three miscarriages in the past. We did all the necessary test (Antibodies, IgG, IgM, Antiphospolipid, Lupus and finally chromosome). Doctors could not find any reasons why she had miscarriages. During the last three pregnancies, she had very similar symptoms….that is bleeding in 7th or 8th week, blood clots (large) in her uterus for the weeks up to 17th week. Doctors treated her with Susten (Progesterone injection) and HCG injection. Also all the three times we had to force the pregnancy to happen. She was treated with Fertibex Tablet to get conceived. I am unable to understand why is she experiencing repeated pregnancy loss. Also could not understand the results of APS test. and it is normal when we tested after her pregnancy loss. Doctors, I think, do not know when to perform this test? Is that during her pregnancy or after the pregnancy loss or before the pregnancy? Can someone answer my questions?

HSS on the Move says:

Thanks for your question. We’re sorry to hear about your and your wife’s struggles. Rheumatologist Dr. Jane Salmon said, “There are many causes of miscarriages, and unfortunately in about one-third of patients who miscarry, we don’t know why. High levels of antiphospholipid antibodies are associated with miscarriages in some patients, but most of these patients do fine.” We recommend you speak with your wife’s physicians about her test results and your concerns. If you would like to make an appointment with an HSS physician, please contact our Patient Referral Service at 877-606-1555 or visit them online at https://www.hss.edu/secure/prs-appointment-request.asp.

Jamie says:

Do you normally recommend planning the delivery date ahead of time, or letting nature take it”s course? I”m 8 months pregnant with APS, and had 2 clots in my life. I”m concerned that letting nature take it”s course is too risky since I don”t know when the baby will come in relation to when I take heparin, so maybe a planned induction or a C-section would be safer?

HSS on the Move says:

Hi Jamie – Congratulations on your pregnancy. Rheumatologist Dr. Jane Salmon says, “Given that you had clots and are receiving heparin to prevent pregnancy-associated clots, it is best to schedule your delivery. If you are on low molecular weight heparin (lovenox) you can be transitioned to unfractionated heparin near term and labor can be induced if there is no other reason for a C-section.” It is best to consult with your treating physician.

mimi says:

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HSS on the Move says:

Hi Mimi – Thanks for reaching out. We’re glad you learned something from this post. Let us know if you have any questions.

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Mpotseng says:

My first pregnancy was a normal one but delivered with c-section. I was diagnosed with APS after 2 miscarriages after first pregnancy. Had to inject myself with Clixane for the 3rd pregnancy until delivering the baby with c-section. i would like to know if i can still have baby number 3. I really want to try for number 3 now.

HSS on the Move says:

Thanks for reaching out. Rheumatologist Dr. Michael Lockshin says, “Thanks for the question. I would need much more information about you to offer an accurate answer to your question, but, in general, if your last pregnancy under treatment with low molecular weight heparin (Clixane) was successful, and, presuming you don”t have other medical concerns such a kidney or heart disease, a subsequent pregnancy should be successful. Whether you will need another Caesarean section will depend on the obstetrical criteria for operative delivery at the time of delivery.” Please consult with your physician regarding this question or any other concerns.

Dinny says:

Hi, im also diagnosed with APS after 6 miscarriages. I have a 10 yrs boy but hev struggled after him. When I was pregnant kadt year I was using Clexsane and Ecotrin pills but still ut happened. Im now trying for a baby. Hope this time its gonna work.

HSS on the Move says:

Thanks for your question. Rheumatologist Dr. Michael Lockshin says, “Although it is not approved for use and is very expensive, we have had some success giving monthly intravenous immunoglobulin in addition to low molecular weight heparin (Lovenox, Clexane) and aspirin to women who have had repeated miscarriages on low molecular weight heparin and aspirin alone. In the United States some insurers pay for it, but some do not. It is not dangerous.” It is best to consult with your physician on these or other concerns. If you’d like to make an appointment with an HSS physician, please contact our Physician Referral Service at +1.877.606.1555 or https://www.hss.edu/secure/prs-appointment-request.asp?pageid=6463.

Emily says:

I am 25 years old, and I was recently diagnosed with APS after having a stroke. In a previous pregnancy I suffered from preeclampsia and lost my son at 26 weeks. Could the APS and preeclampsia be related in any way? Could a pregnancy with APS and history of preeclampsia be successful, or am I asking for trouble?

HSS on the Move says:

Hi Emily, We’re sorry to hear about your troubles. Rheumatologist Dr. Michael Lockshin says, “You asked two questions. The first is whether a pregnancy with APS and prior preeclampsia can be successful, and the answer is yes. Depending on your specific circumstances – your blood pressure, your kidney function, and many other things including how you are treated during a subsequent pregnancy – the risk of recurrence can be as low as 25%. The second question is whether you are asking for trouble, and the answer to that is a pregnancy leads you into the unknown, so if your personal safety is the highest priority you are safer nonpregnant than pregnant. I have seen different people choose their priorities in different ways. If you are local, we will be pleased to evaluate you here to give a more precise prediction.” To make an appointment with an HSS physician, please contact our Physician Referral Service at +1.877.606.1555 or https://www.hss.edu/secure/prs-appointment-request.asp?pageid=6463. Wishing you the best.

M.raquel says:

Hi.
I have APS & its been a yr. Since my diagnosis & lost my
Son. I was wondering if stress is a big factor, age & weight? Do these things make it worst?

HSS on the Move says:

Thanks for reaching out. We’re sorry to hear you’re having trouble. Rheumatologist Dr. Jane Salmon says, “The brain and stress can influence the immune system, but its effect on APS is not clear. Obesity creates an inflammatory state and this may alter severity of disease, again, it is not known specifically how it affects APS.” Please consult with your physician with any questions. If you’d like to make an appointment with an HSS physician, contact our Physician Referral Service at +1.877.606.1555 or https://www.hss.edu/secure/prs-appointment-request.asp?pageid=6463.

Tifanie says:

Hi. Is there a link between HELLPs and APS?
My first pregnancy I developed HELLPs and delivered at 30 weeks. My son, now three, is healthy and wonderful and we are thinking of having another one. I was recently diagnosed with lupas anticoagulant and wonder if this cause my complications in my first pregnancy? And with treatment for APS can I avoid these complications a second time around?

HSS on the Move says:

Hi Tifanie, Thanks for your question. Rheumatologist Dr. Jane Salmon says, “Patients with APS are more likely to get preeclampsia, and HELLP is severe form of preeclampsia. Although there are no studies to prove that anticoagulants will prevent a recurrence of preeclampsia, given the seriousness of HELLP it is important to intervene with treatments for APS and to have very close monitoring by your obstetrician.” It is best to consult with your physician on any concerns.

victoria says:

hi.
I had a miscarriage in 2009 and I was tested for APS then. IgG was negative and IgM was between positive and negative. Then I had a normal successful pregnancy in 2011 conceived naturally. However 2 weeks I had a second miscarriage and I started to wonder if I should be checked again for APS. Is it possible to have APS and have normal pregnancy? I know cases of women who had a normal pregnancy and then later were tested positive for APS and had to have aspirin and Heparin to have a successful pregnancy. Can you please explain this? Thanks very much

HSS on the Move says:

Hi Victoria, Thanks for reaching out. Rheumatologist Dr. Michael Lockshin says, “I think you are asking if you had a weakly positive test in the past and it is negative now, could you still have antiphospholipid syndrome? The answer to the question is no, because it is necessary to see the chest be strongly positive (IgG or IgM) repeatedly to make the diagnosis. Low positive tests are fairly common, are usually attributed to a recent infection of some sort, and quickly turn negative. That said, it would be worth repeating if you”re considering another pregnancy. Also, in addition to the anticardiolipin test, one would want to know whether a lupus anticoagulant test was also negative, and a test for antibodies to beta-2 glycoprotein one (IgG and IgM). We don”t consider people negative for antiphospholipid unless they are negative for all 3 types of tests.” Wishing you the best. If you’d like to make an appointment with an HSS physician, please contact our Physician Referral Service at +1.877.606.1555 or https://www.hss.edu/secure/prs-appointment-request.asp?pageid=6463.

deepak says:

hi,
Similar case with my wife. Had 3rd m/c in 2008 with ACLA IgM positive (@ +45). Treated with clexane from 5th to 8th month of pregnancy then, but stillbirth.

Now, before getting pregnant again, she”d got tested for LA & ACLA (IgG,IgM) twice (with a gap of 4-5 weeks). All these tests are negative and therefore, we planned again in Oct”13.

Should we go through the LA/ACLA test again these days (after 12weeks of preganncy) or what do you suggest?

PS: She”s on baby aspirin since conception.

deepak

HSS on the Move says:

Hi Deepak, thank you for reaching out. Dr. Michael Lockshin, Rheumatologist, says: “There really isn’t enough information to be certain here- at what time of pregnancy did the miscarriages occur? Was the baby you lost through stillbirth normal size for the length of pregnancy, or small? What did the placenta look like? Were other causes, such as infection or a knot in the umbilical cord, excluded? Was Clexane stopped before or after the baby died? That said, if I understand correctly, she had a single positive lgM anticardiolipin test and repeated other tests were negative. 45 MPL units is not terribly high, so, unless other tests were positive, it probably does not explain the stillbirth. My guess is that further testing will be negative. On the other hand, there is no danger to repeating the tests except for the cost. If it is negative, you will be reassured. If it is clearly positive, it probably would be worthwhile to reintroduce Clexane for the remainder of the pregnancy.” It is best for you to consult with your treating physician. If you are interested in receiving care at HSS, please contact our Physician Referral Service at 877-606-1555 for further assistance.

tasha says:

Hi thanks for sharing this post I found it helpful. I was diagnosed APS after my 3rd miscarriage. I”m told now I will have to inject claxine once a day when I get pregnant again aswell as 75mg asprin. I would like a c section when I do get pregnant again. Why is it best to have a c section with APS? Will I have more scans when I get pregnant? What other tests will be done during my pregnancy? I just want to know everything and do everything I can to have a successful pregnancy. Thanks for your help.

HSS on the Move says:

Hi Tasha, Thanks for reaching out. Rheumatologist Dr. Lisa Sammaritano says, “Some form of heparin (including the clexane) and a low dose of aspirin have been shown to be effective in preventing further miscarriages in patients with APS. In addition to the medicines, you will probably be monitored during the second half of the pregnancy with testing to make sure the placenta is working properly and the fetus is growing normally (this includes ultrasounds and fetal heart rate tests called “nonstress tests”). You do not need to have a cesarean section because of APS, but scheduling the delivery (the doctor may want to induce you) can be helpful because then you know when to stop the blood-thinning medications to avoid bleeding.” Wishing you the best. If you’d like to make an appointment with an HSS physician, please contact our Physician Referral Service at +1.877.606.1555 or https://www.hss.edu/secure/prs-appointment-request.asp?pageid=6463.

Tricia Harrison says:

Hi I was wondering if you could please help me to understand what”s going on with me, I had a perfectly healthy little girl in jan 2007, this was my first pregancey & she was full term with no problems. Since then my husband & I have tried 4times to have another baby & sadley they have all ended in miscarrage. The first one I miscarried at around 5 weeks & there wasn”t much bleeding or cramping, the second one I miscarried at around 10 weeks &there

HSS on the Move says:

Hi Tricia, We’re sorry to hear about your struggles. Rheumatologist Dr. Jane Salmon says, “There are many causes for recurrent early miscarriage. In patients with SLE (systemic lupus erythematosus), we look for anti-phospholipid antibodies.” It is best to consult with your physician on these or other concerns. If you’d like to make an appointment with an HSS physician, please contact our Physician Referral Service at +1.877.606.1555 or https://www.hss.edu/secure/prs-appointment-request.asp?pageid=6463.

Parvathy says:

hi .. I am 25 years old and I am diagnosed with SLE and APS. I am very very worried about this. Can I get pregnant and safely deliver a baby? I am taking a steroid, Folitrax and Aspirin now.

HSS on the Move says:

Thanks for reaching out. Rheumatologist Dr. Michael Lockshin says, “I would need to know a great deal more about the extent of your illness to give any specific advice. Many patients with SLE and APS can safely carry and deliver a baby, but it depends on individual factors, such as whether the kidneys are or are not involved, whether you have had blood clots in the past, what type of antiphospholipid antibody you have, how much steroid you are taking, and many other things. You listed one of your medications as Folitrax. Consult with you physician about planning a pregnancy and risks/benefits associated with the drugs you are taking.” If you’d like to make an appointment with an HSS physician, please contact the Physician Referral Service at +1.877.606.1555 or https://www.hss.edu/secure/prs-appointment-request.asp?pageid=6463. Learn more from the International Center at http://www.hss.edu/international-center.asp.

Parvathy says:

Thanks doctor.. I have not had any clots till now. My kidneys are also functioning properly as said by my doctor. I am taking Medrol 4mg steroid now.

Lori Martin says:

Is it possible to have undiagnosed APS, have miscarriages and then have a successful delivery prior to diagnosis and treatment? Thank you

HSS on the Move says:

Hi Lori, thanks for your question. Rheumatologist Dr. Alana Levine says, “It would be unlikely, but not impossible, for a woman to have multiple miscarriages as a result of obstetric APS and then go on to have a normal, healthy pregnancy without treatment. Recurrent miscarriages before 10 weeks of gestation is one presentation of obstetric APS. If you have questions about a diagnosis of APS, you should discuss this with your doctor so the proper evaluation and work up can be done.” If you’d like to make an appointment with an HSS physician, please contact the Physician Referral Service at +1.877.606.1555 or https://www.hss.edu/secure/prs-appointment-request.asp?pageid=6463

Jenna says:

Yes it is. This happened with me! I had recurrent miscarriages and then had my second son before i was diagnosed with SLE and APS. There was no treatment during my second’s sons pregnancy for APS since I didn’t know I had it

Laura says:

My daughter at the age of 10 was diagnosed ITP,
Idiopathic thrombocytopenia purpura. (4000 platelets)
Treated with WinRho and after a year or so her platelets were normal. No more problems until just after her 18th birthday. She woke up with pain in her chest, later diagnosed with blood clots in her lungs. She was put on lovenox (100mg) daily. Then four years later almost to the day she again developed a blood clot in her leg that went to her lungs, a mesh was put in to help clots from traveling up again. She has been on lovenox for 5 years, married and now has been told not to have children. Also her menstrual cycle has stopped. What are her chances of ever becoming a mother?

HSS on the Move says:

Hi Laura, thank you for reaching out with your question. Dr. Michael Lockshin, Rheumatologist, says: “There are two issues here. The first is whether after that history, pregnancy is possible (yes) and whether there is a risk to the mother (not so much) or to the baby (yes, if this is due to antiphospholipid syndrome, which I suspect it is). Nonetheless, it is possible – not necessarily desirable, given the risks – to have a healthy liveborn child despite all of these issues. The second issue is fertility. Nothing in the history you have provided gives a reason for her menstrual cycle to have stopped. If there is not an endocrine reason for her periods to have stopped, that is – if she is fertile, then she can become a mother. Not the platelets, nor the winrho nor the filter nor the lovenox would explain absence of menstrual periods.” To determine what is best for you and your health, please consult with your healthcare provider. If you are interested in receiving care at HSS, please call our Physician Referral Service at 877-606-1555.

Bebe says:

Hi, after 2 miscarriages, my blood showed elevated protein C , and “borderline” for lupus anticoagulants. I”ve just had the tests repeated the other day , with results not in yet.

I never had any other symptoms of having this condition, like clots or DVT. My monthly flow will sometimes have clots but that”s about it.

If it turns out that I do have this condition, my question is could this also be preventing me from conceiving? It took us a year to get pregnant a 2nd time, and I was wondering if this condition has anything to do with it, or if that was just our luck? Thank you.

HSS on the Move says:

Hi Bebe, thanks for your question. Rheumatologist Dr. Alana Levine says, “Although controversial, most experts do not think antiphospholipid syndrome (APS) causes difficulty conceiving. There is no controversy that APS can create problems for an established pregnancy. APS is an autoimmune condition that may cause patients to develop blood clots (deep vein thrombosis, pulmonary embolism, or stroke) and/or problems during pregnancy. Some pregnancy-related issues seen in women with APS include multiple miscarriages during the first 10 weeks of pregnancy, loss of a fetus during the second or third trimesters, or abnormalities in the placenta leading to problems with the fetus’ growth or premature delivery. A diagnosis of APS also requires certain blood test results, such as the lupus anticoagulant, to be positive on two separate occasions at least 12 weeks apart. This is important, particularly because sometimes patients may get a false positive result that is negative when checked later on.” If you’d like to make an appointment with an HSS physician, please contact the Physician Referral Service at +1.877.606.1555 or https://www.hss.edu/secure/prs-appointment-request.asp?pageid=6463

Thessa says:

Hi I”m thess, I experienced unexplained fetal death on my first pregnancy, and on my 2nd & 3rd experienced was miscarriage. My ob told my that maybe I have APAS. Im not treated yest since Im still saving for my lab test. My question is can I have a test before getting pregnant and be treat?

HSS on the Move says:

Hi Thessa, we are very sorry to hear that. Dr. Michael Lockshin, Rheumatologist, says: “It is better to have the test done while you are pregnant, but it can be done before pregnancy so that the obstetricians are alerted. However, you can’t be treated before the pregnancy just to get rid of antibody – you have to be treated throughout the entire pregnancy, and that can be somewhat expensive. Depending where you are, it may be possible to get funds to treat you during a pregnancy.” To determine what is best for you and your health, please consult with your healthcare provider. If you are interested in receiving care at HSS, please call our Physician Referral Service at 877-606-1555.

Aishath says:

I am 26 years old and APS positive. I took Acitrome tablets till I got pregnant a year ago. Since the beginning of my pregnancy I was given clexane twice daily with Aspirine 75 mg once daily. I lost my baby at 7 months. Can you please give me your opinion in my case as I am worried about what will happen to next pregnency ??? Is there any other treatment for me???

HSS on the Move says:

Hi Aishath, we are very sorry for your loss. Dr. Michael Lockshin, Rheumatologist, says: “Acitrom is anticoagulant available in India that is similar to warfarin. It is usually prescribed after a blood clot, not just after an abnormal blood test. In your next pregnancy, you will likely need very careful monitoring, need to take heparin and aspirin again – and there may be a risk of prematurity. For instance, if the fetal growth rate slowed and/or amniotic fluid started decreasing and/or there were signs of fetal distress, we would recommend delivery whenever that occurred. In our hospital, we have been able to achieve about 80% live birth rate, almost all greater than 28 weeks and most of them after 32 weeks.” To determine what is best for you and your health, please consult with your healthcare provider. If you are interested in receiving care at HSS, please call our Physician Referral Service at 877-606-1555.

Sarah says:

I have been diagnosed with APS after a full term still birth where I tested positive for lupus anticoagulant twice in pregnancy & negative a couple of months after my son was delivered.

I am currently 6 weeks pregnant & taking aspirin with the view to taking heparin once a viable pregnancy has been confirmed. However, I have been taking pregnancy- specific multivitimins with folic acid until now having not realised there was some debate over suitable vitamins for those taking anticoagulant medication. Can you tell me the affect of vit k or vit c for me whilst pregnant with APS & taking aspirin & heparin? Should I be avoiding anything with these in?

HSS on the Move says:

Hi Sarah, thank you for your question. Dr. Michael Lockshin, Rheumatologist, says: “It is unusual for the lupus anticoagulant to disappear, but possible. We would recommend beginning heparin as soon as you know you are pregnant and not waiting for confirmation of viability. Vitamin K will interfere with warfarin (Coumadin) anticoagulation but not with heparin anticoagulation, and vitamin C is perfectly okay.” To determine what is best for you and your health, please consult with your healthcare provider. If you are interested in receiving care at HSS, please call our Physician Referral Service at 877-606-1555.

A.K. says:

My mother and sister were diagnosed with Antiphospholipid Syndrome. I have had the blood tests (on two separate occasions, a year apart) and have been negative for any signs of APS. I am hoping to get pregnant within the next year (never been pregnant before so no previous miscarriages or issues). My question is, if I tested negative now, will I always test negative? Can pregnancy bring this on? Aging?

HSS on the Move says:

Hi A.K., thank you for reaching out with your question. Dr. Michael Lockshin, Rheumatologist, says: “If you have recently tested negative, you are probably OK. It doesnt guarantee that you will always be negative, but we think tests would have to be positive for several years before a patient is truly at risk. Pregnancy does not bring it on, nor does aging.” It is best to consult with your treating physician. If you are interested in receiving care at HSS, please reach out to our Physician Referral Service at 877-606-1555 for assistance.

Elzy says:

I am having APS & got preganent a year ago.i took heparin & aspirin throughout my pregenancy but i lost my baby at 30 weeks.i am so worried about my second pregenancy.Can I get pregnant and safely deliver a baby?

HSS on the Move says:

Hi Elzy, thank you for your question. Dr. Michael Lockshin, Rheumatologist, says: “It is possible, but you will need very careful monitoring, and likely will need to take heparin and aspirin again and there may be a risk of prematurity. For instance, if the fetal growth rate slowed and/or amniotic fluid started decreasing and/or there were signs of fetal distress, we would recommend delivery whenever that occurred. In our hospital, we have been able to achieve about 80% live birth rate, almost all greater than 28 weeks and most of them after 32 weeks.” To determine what is best for you and your health, please consult with your healthcare provider. If you are interested in receiving care at HSS, please call our Physician Referral Service at 877-606-1555.

Candice Bierling says:

Hi, I”m 30 years old and was diagnosed with APS at the age of 26 after having blood clots in my legs. In January I fell pregnant. I was 18 weeks pregnant (on 40mg Clexnane once a day) and started getting flu-like symptoms, nauseua, itchy skin and vomiting. I had high fevers and severe pain. I was admitted to hospital for a high infection count and vomiting. I was told that I have Hepatitis, glandular fever and an infection in my kidneys. After 2 weeks (20 weeks pregnant) I developed high blood pressure and severe edema. I gained about 25 kilograms in 2 weeks. I had a lot of water retension. I had protein in my urine and my kidney function weakend. At 22 weeks I went for a scan and I was told that my baby was not developing well and was not getting enough oxygen. I had to be admitted to hospital and be enduced. I then had to give birth to my baby at 22 weeks, unfortunately there was no chance of survival. My question is: Should I try again? Will all this just repeat itself again? With my last check up, I had no protein in my urine and my kidney function was back to normal. My BP is also back to normal. Please help me

HSS on the Move says:

Hi Candice, we are sorry to hear that. Dr. Michael Lockshin, Rheumatologist, says: “It likely was not hepatitis or glandular fever, but either “HELLP” (Hypertension-elevated liver enzymes-low platelets) syndrome or liver infarction (blood clot in liver), both of which are associated with APR. Risk of recurrence in subsequent pregnancy is about 20-25% but, obviously, another pregnancy is dangerous, so you will have to make a decision whether that risk is or is not too high for you to consider. In subsequent pregnant after HELLP we recommend full anticoagulation with low molecular weight heparin from the instant the pregnancy is confirmed. I have also chosen to use intravenous immunoglobulin, 0.4 g per kilogram once monthly throughout the pregnancy if possible (it is very expensive in the U.S. and is not always covered by insurance).” To determine what is best for you, please speak with your healthcare provider. If you are interested in receiving care at HSS, please call our Physician Referral Service at 877-606-1555.

Sami says:

Hi, I am 25 years old and have been married for 8 year. I have had 5 miscarriages at 13 weeks, 8 weeks, 6 weeks, 3 weeks and 9 weeks. I have been diagnosed with APS during the 3rd pregnancy and was put on Clixane but it did not work. I am allergic to Aspirin due to my Asthma and recurring nasal polyps.

Is there anything else other than aspirin that I can take before the pregnancy and then continue on the Clixane once the pregnancy is positive?
Is there a diet or eating and exercise plan that I should follow?
Does lots of movement cause any harm during pregnancy as I travel for over 100KM a day to and from work?

I would really appreciate it if someone could help me as this is now causing mental strain not knowing what will happen,

Please pray for me as god knows best.

HSS on the Move says:

Hi Sami, we are sorry to hear that. Dr. Michael Lockshin, Rheumatologist, says: “It is unfortunate about the aspirin, but I would consider using the clexane again. It is possible that the 3 through 8-weeks losses are not due to antiphospholipid syndrome, since most losses occur after that. Have you been evaluated for other reasons for early fetal loss? If no other reasons have been found, and if it is available to you and affordable, I would consider, with your physician, the use of intravenous immunoglobulin, 0.4g per kilogram once monthly throughout the pregnancy as an additional treatment. I don’t think the travel is important and I do not have a diet or exercise plan to offer. You should discuss with your treating physician who could best advise.” If you are interested in receiving care at HSS, please call our Physician Referral Service at 877-606-1555.

Kristie says:

I was diagnosed with APS a little over two years ago at the age of 24…I have two children ages 6 and 4. I was diagnosed after having a really hard time breathing and I passed out which led to me hitting my head and having to get stitches. The doctor found multiple pulminary embolisms on both of my lungs and said that it was a miracle I was sitting with him at that moment. The last two years have really been a strugle for me. Being 24 years old and having to deal with all of this was very overwhelming and it still is. I know that i have already been blessed with two beautiful children (which is a miracle in itself) but I would love to have another child. I have been told yes and no so many times that I am confused and do not understand if it is even possible anymore. I just keep getting knocked down each time I start to look up.

Basically, I guess my question would be this:
Is it too risky to try and discuss getting pregnant again or should I just suck it up and be thankful for the two that I have (which i am very thankful)?

HSS on the Move says:

Hi Kristie, thank you for reaching out with your question. Dr. Michael Lockshin, Rheumatologist, says: “Yes, unfortunately, another pregnancy will be risky, but it is not impossible. The question is, what do you mean by ‘too risky’? It should be possible to prevent further blood clots if you are very rigorous with anticoagulation, but sometimes people fall behind, and another pulmonary embolus could be quite severe. Some physicians would recommend prophylactic insertion of an IVC (inferior vena cava) filter but that has its problems as well. Is your pulmonary artery pressure and lung function normal now? If it is abnormal, that adds to the risk.” To determine what is best for you, please speak with your healthcare provider. If you are interested in receiving care at HSS, please call our Physician Referral Service at 877-606-1555.

mel says:

Hi

I am 28 years old and I have had seven miscarriages. After the sixth I was diagnosed with APS and endometriosis. It took me 3 years to conceive the 7th following a laparoscopic ablasion for the endometriosis, six months on lupron, and then four rounds of clomid. When I finally did get pregnant with the seventh i was put on lovenox and aspirin. I still miscarried at 8 weeks. My question is, is there any point in continuing? Statistically is there even a likelihood of having a pregnancy?

HSS on the Move says:

Hi Mel, we are sorry to hear that. Dr. Michael Lockshin, Rheumatologist, says: “If your miscarriages were all early (i.e., before 8 weeks), then there is a possibility they are not due to APS, since most APS-associated miscarriages occur after that time and usually after 12 weeks. You might consider whether there are other possible explanations. The question is your emotional strength in the face of all of this. I have seen one patient who went through 12 consecutive miscarriages but now has an absolutely lovely daughter.” To determine what is best for you, please speak with your healthcare provider. If you are interested in receiving care at HSS, please call our Physician Referral Service at 877-606-1555.

Rebecca says:

Hello. After 2 miscarriages I have been diagnosed with APS. I have no other symptoms. I have been told that when/if I get pregnant again I will have daily clexane injections. Should I been taking anything now, like aspirin? I don”t really know what to do? Also, is it more difficult to get pregnant with APS? Thank you.

HSS on the Move says:

Hi Rebecca, thank you for reaching out with your question. Dr. Michael Lockshin, Rheumatologist, says: “The general rule is that you do not need any treatment if you are not pregnant and have not had blood clots. Recent research suggests that the use of hydroxychloroquine (plaquenil) may make a future pregnancy success more likely. This research has not yet been confirmed. If you were to take that drug, you should begin it 3 months or so before you become pregnant since it takes that long for the drug to become effective. It is not more difficult to get pregnant with APS.” To determine what is best for you, please speak with your healthcare provider. If you are interested in receiving care at HSS, please call our Physician Referral Service at 877-606-1555.

Megan says:

Hello,
I had a full term healthy pregnancy in 2008 and then I got pregnant again in 2009. I had my baby girl stillborn at 27 weeks. They said she was small for her age. I then got pregnant again in 2011. I had my son premature at 31 weeks and he weighed 2 pounds 6 ounces. They said his cord was small not giving him enough nutrients so he was also small for his age. Now we have been trying for two years and cannot get pregnant. Does it sound like I could have aps? Where should I go to get tested? Thanks

HSS on the Move says:

Hi Megan, thank you for reaching out with your question. Dr. Michael Lockshin, Rheumatologist, says: “Regarding your pregnancies, it is possible that the problems were due to APS but many other explanations are also possible. It is fairly easy to do tests to determine whether you do or do not have antiphospholipid antibody. The tests generally do not become negative when you are not pregnant. Difficulty getting pregnant would not be a part of APS. As I don’t know your location, I cannot tell you where exactly to go, but the tests are available worldwide (it’s a simple blood test).” If you are interested in receiving care at HSS, please call our Physician Referral Service at 877-606-1555.

Faiza kasher says:

Hi I have been diagnosed with APS after loosing my little boy. I was told that I would be on baby asprin and clexane, however I am allergic to asprin and I
Am not sure if I am allergic to clexane but i am hoping I not. Are there any alternative medications to asprin? Thank you

HSS on the Move says:

Hi Faiza, thank you for reaching out with your question. Dr. Michael Lockshin, Rheumatologist, says: “It is unfortunate about the aspirin, but it should not be a problem to take clexane. There is no relationship between the aspirin allergy and problems with clexane. Some patients can be treated with intravenous immunoglobulin, usually 0.4g per kilogram once monthly during pregnancy. There is early, but not yet confirmed, data that hydroxychloroquine (plaquenil) is also protective.” To determine what is best for you, please speak with your healthcare provider. If you are interested in receiving care at HSS, please call our Physician Referral Service at 877-606-1555.

Pixxxie says:

I was diagnosed with APS after my 6th pregnancy. My 7th pregnancy ended in a miscarriage i was taking clomid to concieve, progesterone, heparin x2 daily, and baby asprin..im also rh negative and my husband is Rh positive and this point im borderline losing hope because all i hear is success storys after multiple miscarriages and i can seem to fall into that success story..is it even possible to have a successful pregnancy after all of this? Also would it be any help to see a hematologist/rheumotologist?

HSS on the Move says:

Hi Pixxxie, we are sorry to hear that. Dr. Michael Lockshin, Rheumatologist, says: “Yes and yes. But be sure the physician you consult is experienced in treating APS pregnancies, since many people think they know what to do, than have actual experience with such patients.” If you are interested in receiving care at HSS, please call our Physician Referral Service at 877-606-1555.

Maureen says:

First, thank you for having such an informative site. Have been searching online and find so many research articles that are very hard for the average-non-medical person to understand.

My situation is a bit unique. We got pregnant with our very healthy daughter easily, had a very normal pregnancy, and I gave birth (via c-section due to decelerating heart rate) in September 2011.

In March 2012 I was admitted to the hospital with a very serious pneumonia. In the 2 weeks it took them to figure out that it was fungal pneumonia, they found out my IGG anticardiolipin levels were very high (80+). They called it an incidental finding, unrelated to the pneumonia. I was recommended to follow up later to see if I really do have the blood clotting disorder, or if the levels were elevated because I was so sick.

I retested in December 2012, they were 65. In hopes that they were coming down post infection, we retested again a few weeks ago, they went back up to 70+. Very frustrating. We have now been trying for baby #2 for 7 months. Being that I have never had an “incident” (blood clot, miscarriage), the recommendation seems to be a bit unclear as to whether i would need lovenox if I did get pregnant. At this point, we are just trying to be more educated on the IGG acl levels.

Here are a few of my questions…
1. Am I more at risk for a blood clot or pregnancy complications because my levels are so high?
2. If my levels are high because of my infection, should they definitely come down?
3. If I do have the blood clotting disorder, are you born with it? Or could I have developed it since having my daughter?
4. If I were to seek more medical advice from a doctor, do you recommend a hematologist? Or a Rheumotologist?

Thank you so much!!!

HSS on the Move says:

Hi Maureen, thank you for reaching out. Dr. Michael Lockshin, Rheumatologist, has answered your questions below. It is always best to consult with your treating physician.

1. It is really hard to say in your case because I am not certain, from your story, whether this is infection-induced antibody or autoimmune. I’m guessing the latter, because it has taken so long to go away (it should have continued on down and disappeared by a year if it was infection-induced). Also, is it possible that the “fungal pneumonia” was hemorrhage into the lung? If so, that is a manifestation of antiphospholipid syndrome (APS); if so, the test was not “incidental.” Inability to get pregnant (infertility) is not really a problem with APS in most patients. Regarding Lovenox (enoxaparin), I would make that decision based on what your tests look like at the time you are pregnant; if you do not have a lupus anticoagulant and your anticardiolipin levels are low, I would not recommend Lovenox. If the tests are positive, talk to us again then.

2. Yes

3. You are not born with the disorder. We usually first see signs of it- more likely an abnormal blood test than a symptom- in the late teens or twenties, but we don’t know why at that age. It does not occur as a result of pregnancy, but you could have developed it after the birth of your daughter.

4. Unfortunately, that depends on where you live. In our area (New York) rheumatologists are far more familiar with this syndrome than are hematologists, and this is so in many other areas of the United States, Western Europe, South America, Japan and Australia. In other area, hematologists are more familiar. If you let us know where you are, we can suggest exports near to you.

Samantha says:

I was diagnosed with APS 2 years ago, I’m 24 now. Last year I had numberours blood clots surgically removed (PTE) and afterwards doctors always told me I’d be able to get pregnant it would just have to be planned. Recently, I was diagnosed with PCOS and my OB/GYN told me that I should probably consider not getting pregnant. I know the risks for each of these diagnosis but together is getting pregnant a good idea?

HSS on the Move says:

Hi Samantha, thank you for reaching out. Dr. Lisa Sammaritano, Rheumatologist, says: “Having both APS and PCOS make consideration of pregnancy more difficult than having just one or the other. In APS with a history of thrombosis, the treatment is indefinite anticoagulation, usually with warfarin. Planning for pregnancy involves a switch to some form of heparin (an injectable blood thinner that is safe in pregnancy, unlike warfarin) with careful monitoring by a hematologist to make sure the levels of heparin are appropriate, or therapeutic. Pregnancy in and of itself increases any woman’s risk of developing a blood clot because of the effect of the high levels of estrogen that are a part of pregnancy, so it becomes very important to have the proper protection from the heparin. PCOS becomes a further issue because it can interfere with one’s ability to become pregnant and may require treatment with hormones. This takes time and increases the risk of blood clot formation. For any patient with APS, pregnancy involves risks even with proper treatment, including risk of blood clot and risk of pregnancy loss or complication. PCOS may make things more difficult, with a higher level of risk, but I would not consider it an absolute contraindication to pregnancy based on the information you have presented. To proceed with pregnancy, it is best to have a rheumatologist and/or hematologist and a high risk OB/GYN as part of the team. It makes sense to include a fertility (reproductive medicine) specialist as well, since hormone therapy may be necessary in order to become pregnant.” If you are interested in receiving care at HSS, please contact our Physician Referral Service at 877-606-1555.

Janine DLG says:

I am 42 with APS. I have a healthy 4 yr old girl. When I was pregnant with her, I did not know I had APS. I want to get pregnant again. Do you actually recommend it? If I take medication (aspiring, heparin, etc.) will it affect the baby in any way?

HSS on the Move says:

Thank you for reaching out. Dr. Lisa Sammaritano, Rheumatologist, says: “Treatment for women with prior pregnancy losses and antiphospholipid syndrome includes the combination of low dose aspirin and low dose heparin. These two drugs are considered to be safe during pregnancy: the low dose aspirin does cross the placenta into the baby’s system but does not appear to cause any problems (although high dose aspirin can cause issues in the third trimester); the heparin is a large molecule that cannot pass through the placenta.

Whether a woman is treated with these medications depends on a number of factors: the type and level of aPL antibodies, the history of recurrent early or a single late pregnancy loss, and/or the history of significant pregnancy complications such as preeclampsia or HELLP syndrome. Women without a history of OB problems like these are generally treated either with low dose aspirin or with nothing at all (the studies are very limited in this area); heparin is reserved for the women who have the history of pregnancy loss or other complication. Your age may affect how easily you can become pregnant but it doesn’t affect the APS issue. If you want to become pregnant, see your OB ahead of time to discuss plans for a pregnancy: if he/she wants to treat you with low dose aspirin, it is often recommended that you start it before conception.”

Lucy says:

Hello. I´m very worried to stop taking aspirin 75 mg in week 36 of pregnancy before birth and continue only on low molecular heparin. I do read different stories and options with APS syndrom treatment. I do take aspirin and LM heparin from beginig of pregnancy… i did have couple of early losses before, when i was only on low molecular heparin treatment….my question is what is the standart treatment? Is it safe for baby to stop aspirin this early and continue only on LMWH and then waitt for natural birth maybe up to week 40? Before pregnancy i did not have and manifastacion of APS syndrom only positive antibodies.

HSS on the Move says:

Thank you for your question. Dr. Lisa Sammaritano, Rheumatologist, says: “The standard therapy for antiphospholipid antibody-related pregnancy loss is low dose aspirin in combination with los dose heparin. Since these both have blood-thinning effects, it can be difficult to know when to stop them, because you want to balance the benefit of the medication with the risk of bleeding during delivery.

Stopping the low dose aspirin at 36 weeks is standard practice- this gives the drug a week or so to leave your system (that is about how long it takes to wear off) and then allows for variability as to when you go into labor. Stopping the heparin close to delivery is less of an issue as it wears off in a number of hours rather than days. Because pregnant women with APS are generally monitored in the last trimester with non-stress tests, serial ultrasounds or uterine vessel Doppler studies, the OB will know if the health status of the fetus changes in those last few weeks and can deliver emergently if any problems are detected.

Some OB doctors do recommend continuing the aspirin up to delivery- it depends on the individual patient’s situation and the comfort level of the OB and the anesthesia doctor he/she works with, since many are uncomfortable with this blood thinner being in the patient’s system when it is time to place an epidural for anesthesia during labor. If you are planning natural childbirth- meaning without an epidural- the risk of the low dose aspirin is less, as then it is just the risk from bleeding with delivery and not with putting a needle (and catheter) in your back for the epidural. The best option for you is likely he one your OB has suggested, because it is based on your clinical situation, the plans for monitoring, and the preference of the anesthesia doctor he/she works with. I would discuss your concerns with your OB who knows your case the best.”

Calix says:

Hi there,

I was diagnosed with APS (high IgM antibodies only) after 5 first trimester miscarriages. I went on to have a successful full term pregnancy using lovenox and baby aspirin. Two weeks ago I lost my second son at 24 weeks. He had had low fluid and was about a week behind in growth (although that had been consistent from the beginning). I was on prednisone from 14 weeks on for an ulcerative colitis flare as well. My perinatologist thought the prednisone was helping with the low fluid issue as it improved quite a bit towards the end. I also had multiple SCH’s and bleeding episodes in both my last pregnancy and the successful one.

My question is what are the chances of another stillbirth? Should I be on heparin instead of lovenox? Is there anything else I can do or take to prevent this from happening again? Should I see a rheumatologist as well as my perinatologist? Thank you.

HSS on the Move says:

Hi Calix, thank you for reaching out. Dr. Michael Lockshin, Rheumatologist, says: “The last one does sound like it was antiphospholipid-related, but the ulcerative colitis flare and the prednisone are worrisome parts of your history: a sick mother often does not do well in pregnancy, regardless of the disease. So if the flare was severe and/or the prednisone dose high, that might be the explanation for the loss of your son rather than APS. Also, the hemorrhages might suggest a problem with the placenta attaching well- your obstetrician can answer that question. There is likely no difference between heparin and Lovenox (enoxaparin) for treatment. I can’t think of anything specific to do otherwise for a next pregnancy except to be sure your ulcerative colitis is as controlled as possible. Not all rheumatologists and perinatalologists are experienced dealing with APS-complicated pregnancies. Either would be appropriate if the person you consult has a lot of experience with the problem. You will have to check locally to find the most experienced person in your area.”

clorinda sheridan (@BartoGirl) says:

This was just “wonderful” information for those who have either lost children or had problems with their pregnancies.
My question way back then and still is what if you never have had a problem with your pregnancies?I know for a fact I have had it since puberty,my mother killed herself over it in the 40”s and I was told I was nuts.After two TIA”s 4 major pulmonary emboli,countless dvts,last clot in leg last week,and INR”s and PT”s that are all over charts is anyone doing anything for us?DOUBT IT

HSS on the Move says:

Hi Clorinda, thank you for reaching out. Dr. Michael Lockshin, Rheumatologist, says: “This particular session was specifically about pregnancies, so we didn’t focus on the clotting side of APS, but it is certainly important, and there are, in fact, a lot of people doing a lot of important work with many new drugs. The 14th International Antiphospholipid meeting took place in Brazil in September- in fact, I’ve just finished reviewing a summary paper (soon to be published) from that international consortium for clinical trials, called APS-ACTION, is underway and has initiated its first trial. So, yes, we are doing something for you.”

Clairey says:

Hi Dr Lisa,

I had my 2nd mc on last week in July this year. My ob tested Cardiolipin and Lupus Anticoagulant with my blood on the day when I had mc and they both are negative. However, I am not sure if I actually have APS as my father had blood clot issue and is currently taking Plavix. I am not sure if I get his gene to have APS or any blood clot disorder in the future.

Currently I am at the borderline of low blood pressure – 94/68 with high 250 triglyceride due to low 33 HDL this month. My urine test always showed low specific gravity 1.004 for last 2 years.

What pre-cautions I should take while trying for 3rd time this few coming cycles?

Thanks for your attention.

HSS on the Move says:

Hi Clairey, thank you for reaching out. Dr. Michael Lockshin, Rheumatologist, says: “There are many reasons for miscarriages besides antiphospholipid syndrome, including some genetic clotting disorders. I’m not sure that the low specific gravity has anything to do with it unless you also have a kidney or endocrine problem. I can’t suggest any precautions without knowing much more about your overall health. Have you been evaluated by someone who specializes in recurrent pregnancy loss?” It is best to consult with your treating physician. If you are interested in receiving care at HSS, please reach out to our Physician Referral Service at 877-606-1555 for assistance.

becca says:

Hi I”m 24 i had a successful pregnancy in 2008 and three miscarriages since my dr believes i have aps and an going to be tested but what if i should become pregnant again before i get tested or have the results? Can they find out while I”m pregant, so that i can get the proper treatment? If i should become pregnant before we know would it help to take baby aspirin

HSS on the Move says:

Hi Becca, thank you for your question. Dr. Doruk Erkan, Rheumatologist, says: “I am sorry to hear about your miscarriages. Yes, patients with APS have successful pregnancies. In APS patients with pregnancy losses, the risk of a pregnancy complication is higher than the general population during the subsequent pregnancies and the treatment can significantly increase the chance of a live birth. However, the first step for you should be to determine if you have a clinically significant antiphospholipid antibody (aPl) profile (persistent versus transient aPl, lupus anticoagulant test positive versus negative, anticardiolipin or anti- ß2- Glycoprotein- I tests moderate-to-high titer positive versus low titer positive). Please discuss the diagnosis and the treatment options with a physician who is experienced with APS pregnancies. Low-dose aspirin is generally safe during the pregnancies.” If you wish to receive care at HSS, please contact our Physician Referral Service at 877-606-1555 for further assistance.

Madhumita Das says:

Hello,
I am 30 year old. I have 3- miscarriage between 10-12 week. My OB advice thrombophilia Profile test, in which Anticardiliopin Antibody(Igm) is low positive(13.1) and ACL TOP (protein C level is elevated). Now I am 19 week pregnant with Enoxaparin-40mg daily from 4th week. I was also on Aspirine-75mg and Progestron injection till 15th week, which has been stopped. Baby development is fine at 19th week scan.
At 18 week I have fever for 3 day. I tested fever panel test, in which, my Platlets is low (1.5) and Hemoglobin is also low( 8.2). My OB advice me to retest for Anticardiliopin Antibody. She told, If ACA will be normal, then Enoxaparine -40 Injection wiil be stop. I am scarred to stop Enoxaparin-40 injection due to my faith with this injection. I believe that due to this injection, I am at 19 week.
Can I stop injection, If OB advice ? Please help.

Regards
Madhumita

HSS on the Move says:

Hi Madhumita, thank you for reaching out. Dr. Doruk Erkan, Rheumatologist, says: “I am sorry to hear all the problems. Low positive antiphospholipid antibody tests are usually not important. The first step for you should be to determine if you have a clinically significant antiphospholipid antibody (aPl) profile (persistent versus transient aPl, lupus anticoagulant test positive versus negative, anticardiolipin or anti- ß2- Glycoprotein-I tests moderate-to-high titer positive versus low titer positive). Clinical history, aPl profile, and the platelet count should be all included in the final treatment decision; please discuss with your physician.” If you wish to receive care at HSS, please contact our Physician Referral Service at 877-606-1555 for further assistance.

rose says:

hello am 33 yrs old am diagnosedwith APS with strongly positive anti cardiolipin antibodies. had an inevitable abortion 6 yrs ago and now am 12 weeks pregnant with low dose aspirin dalily and progesterone injection monthly.just had bleeding with clots with closed cervix and doctor put me on uterogestan 200 tds with complete bed rest! want to know if these drugs ok plz? and doc said ill be put on prednisone dnt knw when. plz advise me

HSS on the Move says:

Hi Rose, thank you for reaching out. Dr. Doruk Erkan, Rheumatologist, says: “Yes those medications are relatively safe. Please discuss with your doctor if you are eligible for heparin treatment during the pregnancy.” If you wish to receive care at HSS, please contact our Physician Referral Service at 877-606-1555 for further assistance.

rose says:

hello plz help want to know if aspirin progesterone and prednisone help in Aps thanks with previous pregnancy loss

HSS on the Move says:

Hi Rose, thank you for your question. Dr. Michael Lockshin, Rheumatologist, says: “Aspirin, yes. Progesterone- I don’t know of any specific trials in APS, but many obstetricians use it, especially if the pregnancy was achieved through IVF. It is not normally recommended for spontaneous pregnancies in APS patients unless earlier pregnancies have not begun well. Prednisone: no, unless you are treating lupus.” It is best to consult with your treating physician. If you are interested in receiving care at HSS, please reach out to our Physician Referral Service at 877-606-1555.

rose says:

hello plz help am 12 weeks pregnant with strongly positive anticardiolipin Ab, had bleeding with some big clots few days ago and was put on uterogestan200 tds n complete bed rest. doc says will be put on prednisone but dnt knw when. am actually on aspirin daily, progesteron injection montly. is the treatment ok or do i need heparin?. plz advise thanks am worried plz help thanks

HSS on the Move says:

Hi Rose, thank you for reaching out. Dr. Michael Lockshin, Rheumatologist, says: “I don’t see a reason for prednisone unless you have lupus or other autoimmune diseases (besides anticardiolipin)- ask your doctor why he/she suggests this drug. Progesterone: depends on your hormone levels. We do recommend heparin, but starting it at 12 weeks may be too late.” It is best to consult with your treating physician. If you are interested in receiving care at HSS, please reach out to our Physician Referral Service at 877-606-1555 for assistance.

Jessica says:

I have a healthy 3yr old, delivered on her due date with no complications in pregnancy (except having PUPPPs). I was diagnosed with APS after my second consecutive miscarriage. I went on to have two more consecutive miscarriages. I am currently a little over 5 weeks pregnant, and my doctor has recommended a low-dose aspirin regimin. I have read (on the dreaded internet!) about all the risks of taking aspirin while pregnant: bad things aspirin can do to a baby, affecting whether or not the placenta can properly attach, etc. Are these real reasons for concern?

HSS on the Move says:

Hi Jessica, thank you for your question. Dr. Michael Lockshin, Rheumatologist, says: “Aspirin is very safe in pregnancy and is part of all treatment protocols that have been successful in patients with antiphospholipid antibody. Some doctors debate about heparin, but no one disagrees with using aspirin. No reasons for concern, despite the Internet.” It is best to consult with your treating physician. If you are interested in receiving care at HSS, please reach out to our Physician Referral Service at 877-606-1555 for assistance.

dhan says:

hi, i am 25 yrs and i have been detected with apla + after 3 months from my first abortion. i had problems like breathing trouble and high fever during the 10 th week of my first pregnancy and lost fetus during the 10th week. After 3 months i took ACA IgG and IgM test. it showed negative and positive result respectively. similarly the Beta-2 Glycoprotien IgM showed Positive result and Beta-2 Glycoprotien IgG showed negative result.. The lupus anticogulant 1 and 2 ratio is 1.28. Will be my next pregnancy riskier… can i give successful birth.. Kindly help me

HSS on the Move says:

Hi Dhan, thank you for reaching out. Dr. Michael Lockshin, Rheumatologist, says: “This is a little hard to answer. The breathing trouble and high fever need an explanation: they wouldn’t be caused by either pregnancy or APS alone, so either you had an unusual complication or something irrelevant, like pneumonia. Also, you don’t say whether the positive tests remained positive or were positive only once. If they stayed positive, your pregnancy will be riskier but you can have a successful birth. How risky, and the other details will depend on the answers to the questions I’m asking about the fever and breathing trouble.” It is best to consult with your treating physician. If you are interested in receiving care at HSS, please reach out to our Physician Referral Service at 877-606-1555 for assistance.

Jaime says:

Hi, I had a stillbirth at 32 weeks, he was 27 weeks in size. There were blood clots over 50% of the placenta. They aren’t sure if it was from the baby passing and my body still pumping blood or if I have a blood clot disorder. Several tests were taken and one came back positive. I was diagnosed with APS. My test came back very slightly elevated. Say the normal range is up to 1.6 and my test result was 1.9 Not sure if those are the exact results but close for an idea. Now, 6 weeks pregnant I was started on Lovenox 40 mg daily. I woke up to use the bathroom, and my pants were soaked in blood. Scared to death now of losing my baby. The doctor had just done an ultrasound that day. I took my shot at 8 pm and was bleeding at 12 am. We had another ultrasound the following day, baby still there with a visible and audible heartbeat. I am taking 81 mg of aspirin daily, except when taking the Lovenox. Can the shot cause bleeding? The doctor noticed blood on the ultrasound, from a hema ? sub? a common pregnancy thing. She said I would have bled if I hadn’t taken the shot. Sense I stopped the shot, I have not bled once. Any advice or help would be appreciated.

HSS on the Move says:

Hi Jaime, thank you for reaching out. Dr. Michael Lockshin, Rheumatologist, says: “The stillbirth sounds like it was related to APS. I’m not sure what results you are reporting, but it probably is the lupus anticoagulant ratio (a comparison of how your blood clots compared to normal blood). If so, the normal ratio is usually 1.3 or less; 1.6 or 1.9 would be considered very strongly positive. Heavy bleeding at 6 weeks is a common obstetrical problem usually due to a vein at the edge of the placenta or an improperly implanted placenta. Whether the pregnancy survives is mostly a matter of luck: the clot (“hematoma”) either strips the placenta off its implantation site or it does not, in which case it just takes root again as if nothing happened. It is not related to the aspirin or to the Lovenox. Assuming that the lupus anticoagulant test is positive, you may be advised to restart the Lovenox after the bleeding stops.” It is best to consult with your treating physician. If you are interested in receiving care at HSS, please reach out to our Physician Referral Service at 877-606-1555 for assistance.

Lee says:

Hello

I have had 4 misccarriages and most recently a stillborn son at 25 weeks. I test positive (highly positive) for the 3 tests. A hematologist ran the tests in his office cause he doesn’t trust outside labs. It was tested on several occasions by my OB first and most recently a RE who said I have no other autoimmune diseases other then the APS and hashimoto’s (thyroid condition). I want a baby, the loss of my son has been beyond anything I can talk about, if you have any thoughts on how I could have a successful pregnancy I would be much appreciated.

HSS on the Move says:

Hi Lee, thank you for your question. Dr. Michael Lockshin, Rheumatologist, says: “I’m sorry to hear your story. It’s even more difficult to lose a pregnancy so close to viability. There are no easy answers. I assume that Hashimoto’s is closely evaluated and that your thyroid function is normal? I assume also that you received heparin or low molecular weight heparin and aspirin during your pregnancies? If so, and although it is not approved for used in this condition, and although it is very expensive and not always covered by insurance, we have successfully treated some patients like yourself with intravenous immunoglobulin, usually 0.4g/kg monthly throughout the pregnancy (while continuing low molecular weight heparin [enoxaparin] and aspirin). Good luck.” It is best to consult with your treating physician. If you are interested in receiving care at HSS, please reach out to our Physician Referral Service at 877-606-1555 for assistance.

Barbara says:

I am diagnosed with APS, I had a positive lupus anticoagulant test. I had two early misscarriages and I had two second trimester losses with 23 and 24 weeks. My babies were healthy, the only reason I lost hem was because I had preterm labor. Next pregnancy will be the first with heparin and aspirin. Is it very likely I will have other complications aside from the preterm labor? Or is it more likely next pregnancy the preterm labor will the biggest risk instead of stillbirth, growth restriction, or pre eclampsia?

HSS on the Move says:

Hi Barbara, thank you for your question. Dr. Michael Lockshin, Rheumatologist, says “Usually you can tell that a pregnancy is in trouble in a patient with antiphospholipid syndrome because growth rate slows, amniotic fluid decreases, and the baby gets less active. That usually happens at about the time you lost your pregnancies. Preterm labor as the sole reason for losing a pregnancy at that time is fairly unusual. If it is absolutely certain that the babies were full-size and that the placenta was good, I would think recurrence of preterm labor would be the biggest risk. However, I am a little suspicious that the labor was related to antiphospholipid syndrome, in which case heparin plus aspirin is the best bet.” It is best for you to consult with your treating physician. If you are interested in care at HSS, please contact our Physician Referral Service at 877-606-1555 for assistance.

ashley says:

Hello this is my first pregnancy I”m 25 years old and I had my first doctors appointment last month when I was 9 weeks pregnant I”m currently 11 weeks. My ob contacted me last week to go over some test results she was concerned about which was my lupus was abnormal, I always go to the doctor and I never had an abnormal test or any signs or symptoms of lupus. I”m very scared and I don”t want to lose my baby.

HSS on the Move says:

Hi Ashley, thank you for reaching out. It is best for you to consult with your treating physician to get a better diagnosis. If you wish to receive care at HSS, please contact our Physician Referral Service at 877-606-1555 for further assistance.

Anna says:

Hello,

I had three miscarriages (6 weeks, 5 weeks, 4.5 weeks) followed by my daughter who was stillborn at 37 weeks. I know she was alive at my 36 week appointment. We are waiting on the autopsy results, as well as blood tests on me, but I am wondering if this sounds like a stillbirth due to APS. My daughter had decreased fetal movement from around 34 weeks on, which I was assured was normal due to the fetus running out of space in the womb. I also measured small (but within the normal range) at 36 weeks for the first time in my pregnancy; all other measurements had been right on track. She had plenty of fluids and her heart rate was always good at my prenatal appts. She was very small for her gestational age, only 4lbs 9oz at delivery. I went into labor on my own and had no idea she had passed until we got to the hospital to deliver and she had no heartbeat. There were no cord issues, and the pediatrician and OB who were there for her delivery think that she had likely passed 2-6 days prior to delivery. Any thoughts you have about why this may have happened and how we should proceed, both with further testing and with a subsequent pregnancy, are much appreciated.

I should also mention that I was tested for anti phospholipid antibodies and lupus anticoagulants after my third miscarriage and the results were normal. Not even borderline. Is it possible that the testing that was done wasn’t sensitive enough to catch APS?

HSS on the Move says:

Hi Anna, thank you for reaching out. Dr. Michael Lockshin, Rheumatologist, says: “I am sorry to hear that. Losing a pregnancy at term is one of the hardest things to bear. If the baby was so small for dates and had decreased motion, those were very clear signs of a problem. It is very possible that the placenta was failing, a common problem with antiphospholipid syndrome. There are other causes of placental insufficiency, however, so the autopsy results may tell you something different. Regarding the tests, it is a bit dependent on the laboratory that did them, since not all laboratories agree. If it was a good laboratory and the tests were done more than once, and all 3 tests (lupus anticoagulant, anticardiolipin, antibody to beta-2 glycoprotein one) are negative then a cause other than antiphospholipid syndrome is more likely.” If you wish to receive care at HSS, please contact our Physician Referral Service at 877-606-1555 for further assistance.

shumani says:

hi,i had 3 miscarriages all at 24 weeks.now i am 24 weeks,on clexane injection and aspiring.the baby”s heart beat is not so strong and the gynaecologist said she is not sure if the baby will survive.will the medication make a difference?

HSS on the Move says:

Hi Shumani, thank you for reaching out. Dr. Michael Lockshin, Rheumatologist, says: “Clexane (low molecular weight heparin) plus aspirin is a treatment for pregnancy losses that are associated with antiphospholipid syndrome. To be effective, it has to be started very early in pregnancy, not at 24 weeks. In antiphospholipid syndrome, the baby’s growth rate slows down and the amniotic fluid usually decreases before the pregnancy is lost. If this has not happened, then I am not sure what you mean about the heartbeat. There is a different problem that occurs in pregnancy in which the baby’s heart is affected; this only happens in pregnancies of mothers who have antibodies to the Ro/SSA and La/SSB antigens, and the finding is a very slow heartbeat. These antibodies are easy to check. A fetal echocardiogram can determine if the heartbeat has slowed down. If a slow heartbeat is the problem that is happening to your children (it is called neonatal lupus or complete congenital heart block), the treatment is different. Recent information suggests that hydroxychloroquine begun before pregnancy protects fetuses from this complication.” It is always best to consult with your treating physician. If you are interested in care at HSS, please contact our Physician Referral Service at 877-606-1555 for further assistance.

Ankush says:

Hi,
My wife was 16 weeks pregnant…..and her
first pregnancy lead to miscarriage during her 16th week before this she went for a regular check up but there was no heart beat going to which doctor said that she might be unable to hear as it must be in lower vagina on that very day Doctor asked her to get down syndrome test which came positive and she asked her to get chromosome test but then she asked her to check the heart beat but this time again she didnt heard she asked her to get the ultrasound done that assured that the fetus demise. After a month we got the chromosome analysis done which said that there is no abnormality. Meanwhile she also got her cardiolipin antibody iga test which ranged 7.64 and cardiolipin antibody igm which ranged 21.46 doctor said this was the reason of demise and now if you plan u will get injected …. My question cant she get cured cant she take medicine and get the treatment done. The down syndrome report came positive as the blood was taken for test when the fetus was not surviving.

HSS on the Move says:

Hi Ankush, thank you for reaching out. Dr. Michael Lockshin, Rheumatologist, says: “I’m sorry to hear about your wife’s (and your) problem. I’m a bit confused by what you say, but I assume that the blood test for Down’s was positive, the chromosome analysis for Down’s was negative, and the baby didn’t have the appearance of Down’s (if examined), correct? The numbers you report for IgA anticardiolipin is normal (if the same units were used as most but not all laboratory use); the IgM antibody is very borderline and, in my mind, would be too low to cause a miscarriage. Perhaps the doctor has other information such as, was the baby growing normally, or was it small for expected size? If it were antiphospholipid syndrome, that is, if, for instance, a lupus anticoagulant test were positive, the treatment would be injections of heparin throughout the pregnancy plus aspirin. We don’t know a way to cure the problem; we just control it for the pregnancy. However, if the tests that you report were done the same way we do them, and if there is no additional information of other abnormal tests, they are not sufficiently abnormal to justify treatment. If you tell us where you are, we might be able to refer you to a physician or laboratory that we know for further advice.” It is best for your wife to consult with a treating physician. If you are interested in receiving care at HSS, please call our Physician Referral Service at 877-606-1555 for further assistance.

EEC says:

Hi, I am hoping to get a third opinion here. (My RE and parenatologist have differing opinions and my OB doesn’t feel comfortable diagnosing). History : In 2011 I had a easy/healthy/successful pregnancy as my first. Since then, I have miscarried four times. All four were very early…7 weeks or less. I have done all the blood work, twice. The only positive was phosphatidylserine IGM both times. My levels were slightly elevated, 26 & 28. I also tested positive for MTHFR, but was told this doesn’t factor in to mc, correct? With my slightly elevated IGM, would you recommend the levonox/heparin route, considering all my mc’s were so early? Side note, I’ve been taking lo dose aspirin for the last two pregnancies and I will be trying progesterone early on this next pregnancy. About 10 years ago, I did suffer from a blood clot in my arm from a bad IV. Other than that, no thrombosis. Thank you.

HSS on the Move says:

Hello, thank you for reaching out. Dr. Michael Lockshin, Rheumatologist, says: “Sorry to hear of your problems. If I understand what you are saying, you are correct. Both the very early miscarriages and the low positive antibody to phosphatidylserine are inconsistent with the diagnosis of antiphospholipid syndrome, which is the only diagnosis for which the heparin/enoxaparin (Lovenox) regimen is recommended. I would not recommend such treatment for someone with the laboratory test profile that you describe.” It is best to consult with your treating physician. If you are interested in care at HSS, please contact our Physician Referral Service at 877-606-1555 for further assistance.

myriam says:

I am 33 years old have a history of 9 pregnancies in total.5 miscarriages, 3 succesfull full term babies. In my last pregnancy wich was a twin pregnancy I was diagnose with APS when I change doctors. I was put on (clexane 40) once a day and aspirin. I had a placental abruption at 26 weeks. My babies didnt survive, I loss a lot of blood and almost didnt make it myself. We have being struggling with our loss and would like to try again but we are having a lot of trouble deciding. What are the chances of this event happening again and what else can we do to make it work.

HSS on the Move says:

Hi Myriam, thank you for reaching out. Dr. Michael Lockshin, Rheumatologist, says: “I am sorry to hear that story. There are key factors that play into answering your question. The most important are the details of your being diagnosed as having APS- the laboratory tests, the nature of your miscarriages (how far along, and how much did the babies weigh). People often are told they have APS because they have a history of miscarriages, but only 20% of people with 3 or more miscarriages actually do have APS. If the diagnosis is not clearly confirmed, low molecular weight heparin might not be an appropriate treatment. The other thing that I would say is that placental abruption is not a specific feature of APS, so that loss may be unrelated. Bleeding can be very happy with a placental abruption whether or not you are taking an anticoagulant drug like Clexane. I don’t know your weight. Clexane is usually dosed at 1 milligram per kilogram body weight per day. Unless you are very small (40 kilograms, the dose (if it was 40mg) was small; it will likely contribute very little, if at all, to your blood loss.” It is best to consult with your treating physician. If you wish to receive care at HSS, please contact our Physician Referral Service at 877-606-1555 for further assistance.

Amy says:

Hello,

I am 11 week pregnant. This is my second pregnancy. In the first one I had HELLP syndrom in the 15week. I have a positive lupus, positive test for anticardiolipin (medium), and a positive test for antibodies to beta-2-glycoprotein. During the first pregnancy I was on Clexan 0,4mg every day. Could this be reason for HELLP that this dosage of Clexan was not enough. Now I am on Clexan 0,4mg in the morning and 0,2mg in the evening and 100 of aspirin. My doctors are very unsure should I receive anything else (imunoglobulin or corticosteroids). Please hellp!

HSS on the Move says:

Hi Amy, thank you for reaching out. Dr. Michael Lockshin, Rheumatologist, says: “Clexane, known in the United States as Lovenox, is dosed according to weight. I am certain that you do not mean 0.4 mg, but rather 0.4 mg/kg/day. If you weigh 60 kg, the dose would be 24 mg daily. If my assumption about the dose is true, it probably was sufficient, but it would have been on the low side; the recommended dose is 1.0 mg/kg/day. If you had had prior blood clots, the dose would have been 1.0 mg/kg/twice daily. Aspirin does help. In fact, in a paper we published in 2012, aspirin was probably more helpful than enoxaparin. That said, not everybody has a successful outcome even if treated. The likelihood of recurrence of HELLP is only about 25%. If it does recur, we have had good results giving intravenous immunoglobulin, 0.4 g/kg once monthly in subsequent pregnancies. We have not found corticosteroids helpful except for patients who have clinically active lupus.” It is best to consult with your treating physician so that they can better advise. If you wish to receive care at HSS, please contact our Physician Referral Service at 877-606-1555 for further assistance.

Ann says:

Hi, I tested positive for anti phospholipid antibodies, after I lost my first baby at 22 weeks. I am now 11 weeks pregnant ( I got pregnant 2 months after the loss) and have been on 4500 IU innohep injections once daily and 75mg aspirin once daily since 9 weeks of pregnancy. I am being retested for Antiphospholipid antibodies in 2 weeks time as my doctor told me there should be 2 positive results to confirm a positive diagnosis. I’m just wondering, presuming that the result is definitely positive, does this sound like a high enough dose of heparin to maximise the chances of success in this pregnancy, I know I should trust my doctors, I am just worried that they are possibly treating it more conservatively as I only tested positive once. I would do anything not to go through what I went through the last time, I know nobody and no medication can guarantee success but I really want to know that I am doing everything I possibly can for this baby. Any advice would be appreciated thanks.

HSS on the Move says:

Hi Ann, thank you for reaching out. Dr. Michael Lockshin, Rheumatologist, says: “Innohep is no longer available in the United States, and I have not personally used it. From what I know about it though, if you weigh between 108 and 118 pounds (49-53 kg) you would be taking what is considered to be a prophylactic dose. Double that amount would be a therapeutic dose, which is only given to people who have had prior blood clots. Although the requirement for testing twice is used to exclude people who have the antibody due to infection (in which case it goes away), it is not necessary to have 2 positive tests to justify treating if the clinical circumstances merit. Bottom line: From what you have told me, the dose seems to be appropriate.” It is best to consult with your treating physician so that they can better advise. If you wish to receive care at HSS, please contact our Physician Referral Service at 877-606-1555 for further assistance.

Rebecca says:

I was diagnosed with APS after two miscarriages. On my third pregnancy I was taking clexane and aspirin and I had another miscarriage at ten weeks. The professor I am seeing said I have a very high level of the antibodies, the highest she has worked with before. I am to see another specialist in London but I have read about steroids and progesterone? I”m so worried I”ll never have a baby.

Christina says:

I was diagnosed with APS following 2 miscarriages. The first was a non fetal heart mc and the second was a placental abruption in my 12th week. This was very unusual according to my physician and everything I have researched to have an abruption before the third trimester. Two years ago I also had a tear in my retina at ager 31. Also very unusual. OB started me on “baby” aspirin and we discussed the probability of doing Lovenox injections daily during pregnancy. Is this I should be on daily now?

HSS on the Move says:

Hi Christina, thank you for reaching out. Dr. Michael Lockshin, Rheumatologist, says: “Sorry to hear all that. More needs to be known about why you were diagnosed with APS, since a non-fetal heart miscarriage would not be a criterion for APS (unless there were 3), and abruption is also very unusual. Also, a retinal tear (I assume not a retinal hemorrhage) would not be related. In any event, nothing in your note gives a reason for Lovenox when you are not pregnant, so the answer to your question is no.” If you wish to receive care at HSS, please contact our Physician Referral Service at 877-606-1555 for further assistance.

Joelyn says:

Hi. Thank you doctor for your wonderful advice! I already feel more positive about my condition after reading all the queries and answers!

I am 30 years old, and had a spontaenous miscarriage at 2 months gestation in 2013. A few months afterward, I suffered from DVT and was treated for it. It was during this time that my treating physician diagnosed me of having APLA syndrome based on high antibody titres.

I conceived spontaneously, and am now 32 weeks pregnant. I have been on 75mg aspirin, and clexane (60mg daily) since I conceived.

My OBGYN suggested I increase clexane to 60mg twice daily, because my INR is 1.4 and aPTT is in normal range. But I am skeptical about receiving so many injections. Should I be worried?

Also, what is the best mode of delivery?

And when should the clexane injections be stopped (how many hours prior to CS or normal delivery? )

And when should I resume clexane and aspirin after delivery? (How many hours after delivery)

Doctor, I also want to know if it is safe to begin warfarin instead of injection clexane after delivery. How soon can I start warfarin? How to I transition from heparin to warfarin without putting myself at risk?

HSS on the Move says:

Hi Joelyn, thank you for reaching out. Dr. Michael Lockshin, Rheumatologist, says: “I don’t know everything I need to know about your case, but I can make a few general comments. First, you did not tell me your weight (non-pregnant). Enoxaparin (Clexane) is usually dosed by weight, 1 mg per kilogram for “prophylactic” dose, 1 mg per kilogram twice daily for “therapeutic” dose. You don’t mesure its effect by INR or aPTT, at least in people with lupus anticoagulant. Second, and most important, if you are at 32 weeks and if your pregnancy is normal (the baby is at the right size, there is the right amount of amniotic fluid, and the baby’s movements are normal), that is the only thing that you should be measuring right now, not the dose. If the baby’s growth rate slows, and the amniotic fluid starts disappearing, or the baby’s movements reduce, then the best thing to do would be to deliver, not change the Clexane dose. Third, I am a little puzzled by the INR being 1.4. If it was done more than 4 hours after the last Clexane dose, it should be closer to 1.0. If the INR is persistently raided, it brings up the question of an antiprothrombin antibody, which is a completely different issue for you. Finally, we recommend discontinuing the drug 48 hours before a planned deliver, or assuming you are planning to go into labor, at least a week before expected delivery. It takes at least 24 hours for the drug to be out of your body to allow epidural anesthesia, if that’s what you plan for, or cesarean section if it has to be. A normal delivery without an epidural anesthesia does not require you to stop. You should begin anticoagulation again within 48 hours of delivery, but preferably 24 hours, if you do not have an epidural catheter in place or evidence of bleeding. You can transition back to warfarin at your convenience after that. We consider warfarin safe for breast-feeding, but you should check with your doctors to see if they agree with that. Hope this helps, have a safe and comfortable delivery, and enjoy your baby.” It is best for you to consult with your treating physician. If you wish to receive care at HSS, please contact our Physician Referral Service at 877-606-1555 for further assistance.

Nithya says:

Hi Doctor, Thanks for all the replies above and that assures me of having a healthy baby.

I had 2 miscarriages in a row. First was natural at 9 weeks without the heartbeat and the second was at 14 weeks with the baby’s heartbeat fine. In both the cases I started bleeding a week before the miscarriage happened and passed huge blood clots. In my second pregnancy we sent the baby and placenta for analysis. The report was quite normal for the baby but the placenta report read as follows:
“There is focal fibrin deposition and blood clots. The maternal surface is covered by decidual endometrial tissue and multiple blood clots and collections of leucocytes and fibrinous material”.
The doctor asked me to go for Anti-cardio lipin and Anti-lupus tests. I have an appointment next week to give the blood samples but I wanted to know if these tests would suffice? I am in my second week now after my miscarriage. Please advice the right time to take the tests and also advice on the tests to be taken. I didn’t want another miscarriage because it is extremely painful both physically and mentally. Pls advice.

HSS on the Move says:

Hi Nithya, thank you for reaching out. Dr. Michael Lockshin, Rheumatologist, says: “There are a couple of things to think about with regard to the answers to your question: First, it doesn’t make much of a difference whether you do the tests now or later because the fact of being so close to your miscarriage is not likely to change the tests. On the other hand, you will want to repeat it at the time that you plan a subsequent pregnancy so the only advantage in knowing it now is your personal knowledge; if you have not had blood clots, there is no treatment that would be recommended if you are not pregnant. Second, what you described does not really sound like an antiphospholipid-complicated pregnancy. Usually, you would have expected a small-for-dates baby and some warning that the pregnancy was in trouble. That said, the tests are not onerous. It is a blood test for 3 things: Antibody anticardiolipin, antibody to beta-2 glycoprotein one, and test for lupus anticoagulant. Bottom-line: I don’t think it is terribly important to do the tests at this moment, except to relieve your or your doctor’s anxiety. If you do have the tests done, be aware that a low positive or ambiguous test is important. Only strongly positive tests count.”

Miriam says:

Hi,

After 2 uncomplicated pregnancies, I miscarried my 3rd at 14 wks. Subsequent testing came back strongly positive for APS. What are my chances of having a healthy pregnancy with treatment, and do I need to be treated for this if not pregnant?
thanks,
M

HSS on the Move says:

Hi Miriam, thank you for reaching out. Dr. Michael Lockshin, Rheumatologist, says: “You do not give enough information to be precise (there are many ways to interpret “strongly positive,” that is, lgG or lgM, anticardiolipin or antibody to beta-2 glycoprotein one, lupus anticoagulant yes or no). The numbers vary according to the antibody profile, the lowest statistic would be about 50% for the worst profile and greater than 80% success rate for the best profile. If you have no other symptoms or findings of antiphospholipid syndrome other than the pregnancy loss, you do not need treatment when you are not pregnant. There are some studies going on now to test the advantage of treating people who have test abnormalities no symptoms.” It is best for you to consult with a treating physician so they can better advise. If you wish to receive care at HSS, please contact our Physician Referral Service at 877-606-1555 for further assistance.

Lynda says:

Hello

I have had 3 early losses(5-6 weeks) in the past year. We are using donor eggs from a young donor. After the first loss, I was found to have high positive anticardiolipin Igm antibodies, and positive ANA(1:160). I am not positive for lupus though, nor do I have any outward signs or symptoms of autoimmune disease. After the first loss, and for the second transfer, I was treated with baby asa and lovenox. After the second loss, I received baby asa, lovenox, IVIG one day before embryo transfer and prednisone. Despite these treatments, I still miscarried at 5 weeks. Since all this, we have done 2 subsequent transfers from same batch of embryos into a surrogate. This resulted first, in a negative beta, and then a 9 week miscarriage. My reproductive endocrinologist suspects that all the losses(in me and surrogate) are related to embryo abnormalities. I will be trying another transfer, with immune treatment soon. I am worried that my losses are more indicative of an immune triggered attack in combination with bad embryos. We do have a donor sperm donor egg embryo to try but I just want to make sure I have all the right treatments in place before transferring this embryo into me. Considering my early losses, do you think this could be a result of anticardiolipin antibodies or some autoimmune reaction to pregnancy? If so, do I have any chance left for success? Thanks

HSS on the Move says:

Hi Lynda, thank you for reaching out. Dr. Michael Lockshin, Rheumatologist, says: “The situation you describe is pretty complicated, and there is not very much information about the best treatment for IVF procedures in people with antiphospholipid antibody. We have had experiences with several people who have undergone IVF and we do not believe that the antibody itself is much of a problem for retrieval or implantation or for the early growth of the embryo. Rather, the problems have come later on during the pregnancy. Different infertility specialists use different procedures at the beginning; the aspirin/heparin/IVIG/prednisone regimen is one several different ones proposed, no single regimen having been demonstrably better than another. Bottom line: Although the anticardiolipin antibody is a concern, I don’t think early losses that you described are due to the antibody.” It is best to consult with your treating physician.

Jelena says:

Hi,
My name is Jelena and I’m from Croatia in Europe. I’m 30 years old.
I found your contact on internet and I hope you can help me.

I have diagnosed Anitfphospholipid syndrome which was found because I have pregnancy lost (miscarriages) on 22 weeks of pregnancy (in summer 2012.).
The diagnose was placenta stroke. It was my first pregnancy.
In my common life I don’t have any other clinical problems, but I have livedo reticularis on the extremities (the arms and legs) and my blood tests show positiv Lupus anticoagulant, Anti-beta2-GPI = 46 RU/ml and aCI-IgG = 82 GPL U/ml, aCI-IgGM= 37 MPL U/ml. This results test was before I started use terapy (Resochin).
As a therapy, now I’m using a drog – Resochin (Chloroquinphosphat), 1 tablet (250 mg) per day for last 1 year.

I already know that usually patients like me, in second pragnancy, use heparin. But for me there is a problem. When I was 14-teen years old I had Cavernom (in brain) which was bleeded. Doctors say now that is to risky for me to use Heparin during the next pregnacy because of that Cavernom.

And that is reason why I contact You. Do You have any similar cases or any advice????

Please help me – heparin is too risky for me but is there any chance for me????

HSS on the Move says:

Hi Jelena, thank you for reaching out. Dr. Michael Lockshin, Rheumatologist, says: “Though we don’t have absolute proof (clinical trials are underway), most doctors in the field believe that antimalarials (what you call Resochin) are helpful for maintaining a pregnancy, and do not harm the child, so we do encourage its use. For patients at particularly high risk (the blood tests and the livedo say that this term does not apply to you), who cannot use heparin, we advise intravenous gamma globulin, which we believe neutralizes the antiphospholipid antibody. It is expensive, and has its own set of risks, which you should discuss with your doctor. In pregnancy, we prescribe it at a dose of 0.4 g/kg by slow infusion (several hours) once every month throughout the pregnancy. (If it goes in too fast it will cause high blood pressure and severe headache, which is an additional risk for you). If you weigh 70 kg, that would be 28 g per infusion.” It is best for you to consult with your treating physician so they can better advise.

Lynda says:

Thank-you so very much for your reply. I came back to this site a couple of times after I posted and then got side tracked and forgot to check back. I really appreciate your feedback-it is most helpful.

Molly says:

I was in 1998, after a blood cloth at the age of 18, diagnosed with APS (not Lupus), Faktor V Leiden, and high levels of homocystein. The homocystein is succesfully treated with folic acid 5 mg/week. The APS and Faktor V Leiden is treated with lifelong Marevan (warfarin).

I have wanted a child for years.

I had a miscarriage in week 11 (heartbeat seen in week 7), a miscarriage with twins (heartbeat lost in week 7 for one, and week 8 for the other), and a miscarriage in week 6 (never checked for heartbeat). All conceived via IVF. In all pregnancies I was treated with Innohep. The first pregancy with a dose of 4500 ie per day – this lead to a bloodcloth shortly after the miscarriage. In the other two pregnancies I was treated with 175 ie/kg/day.

This fall i conceived naturally. I was treated with 175 ie/kg/day from the day pregnancy was detected, as well as aspirin 75 mg/day from week 12.
At a scan at week 20 the baby was to the small side but within the normals. By week 22 he had stopped growing (58 % to small) and I was amitted to the hospital. An amniocentesis showed nothing wrong.
In week 24+1 I developed HELLP and at 24+3 my baby was born stillbirth weighing 250 grams (8.8 ounzes). The labor was induced to save my life. The placenta looked fine with no bloodclots.

My questions are:
1. Do you think I got the correct medicine? Should I have other/more medicines?
2. What are the risk of developing HELLP again for me? Is it 20 % as you have written to others?
3. What are the risk of Intrauterine growth restriction (IUGR) will happen again?

Thank you so much for taking your time to read my question.

Best regards,
Molly

HSS on the Move says:

Hi Molly, thank you for reaching out. Dr. Michael Lockshin, Rheumatologist, says: “It does sound that your pregnancies have been complicated by APS. The treatment that you received is appropriate. In patients like you who have had unsuccessful results with heparin and aspirin, we have chosen to give intravenous immunoglobulin, 0.4g per kilogram, once a month throughout the pregnancy. This is not supported by published evidence that it is helpful, and is very expensive if it is not covered by insurance, but it is not harmful, and pregnancies we have chosen to treat with this method have generally been successful, in fact going to term. I do not know of any other intervention that might work. There is an interest in using hydroxychloroquine as well, but no data to support that for pregnancy survival. You are correct: the risk for recurrence is about 20%. (The patients I mentioned above who received intravenous immunoglobulin also had HELLP Syndrome). Unfortunately, the risk of recurrence of IUGR is fairly high. Again, my comments above also apply to babies with IUGR. In other words, the mothers we treated had Preeclampsia/HELLP, IUGR and prematurity (all 3) due to APS. I hope this helps.” It is best for you to consult with your treating physician so they can better advise. If you wish to receive care at HSS, please contact our Physician Referral Service at 877-606-1555 for further assistance.

Milady Torres says:

On 2012 I had my first pregnancy at 34 years, at week 27 I was diagnosed with oligohydramnio and was monitored since that week until week 35 when I gave birth to a premature baby girl by C-section, doctors always said everything was good but my baby was born with bilateral kidney hypoplasia, she died after five days. I got pregnant again and on my first med appointment they noted that the pregnancy stopped, it was a blighted ovum. Now after several studies I was diagnosed with APS and I am taking daily doses of low dose aspirin, my gyn suggested me to take lovenox at the moment I get pregnant again. I want to know if these disease has something to do with my baby girl’s death, because she has several complications due to her kidney disease and died of pulmonary hipertension.

HSS on the Move says:

Hi Milady, thank you for reaching out. Dr. Michael Lockshin, Rheumatologist, says: “I’m sorry to hear of the difficulties you have had with your pregnancies. However, it is unlikely that APS was responsible for either the kidney hypoplasia or the blighted ovum. Those are separate genetic and development issues that have other causes. Normally, if you are otherwise healthy, and have not had blood clots, and if your tests are only weakly positive, you don’t have to take lovenox/aspirin. If your tests are strongly positive, it is a different story. Many people with antiphospholipid antibody have normal pregnancies, but we cannot easily predict which women will not. Other factors determine whether or not to treat. I hope this helps, and good luck with your next try.” To learn more about APS, click here: http://www.ss.edu/condition-list_antiphospholipid-syndrome.asp. If you wish to receive care at HSS, please contact our Physician Referral Service at 877-606-1555 for further assistance. For more information, visit http://hss.edu/physician-referral-service.asp.

Erin says:

Hello! I’m so glad I’ve found this site. I am a 28 year old woman with APS. My mother has lupus, so I’ve been told that my aps is probably from genetics. I was diagnosed in 2006 after having massive DVTs after taking birth control pills. I stopped taking BC, and was put on Coumadin indefinitely after that, and had no further problems for years. In 2012, I became pregnant with my first child. I was taking lovenox shots and baby aspirin throughout the pregnancy. I had no issues, and my son was born healthy at 39 weeks. However, I was told to stop taking my blood thinners for 72 hours after giving birth. A week after having him, I developed a saddle pulmonary embolism and almost lost my life. I also tested positive for ttp while in the hospital. I am now healthy again , on warfarin, and have had no further issues. We would love to have another child, but given my history, do you think it’s safe? I have been given mixed answers by many doctors. Is it likely that if I wasn’t off blood thinners for that long, I would have had a different outcome? I am terrified and torn as to what to do. But having another child is so important to us. Please tell me what you think. Thanks so much for your time!!

HSS on the Move says:

Hi Erin, thank you for reaching out. Dr. Michael Lockshin, Rheumatologist, says: “Glad to hear of your successful pregnancy, and sorry to hear about the pulmonary embolus. TTP (Thrombotic Thrombocytopenic Purpura) is probably not relevant. More likely, it was part of antiphospholipid syndrome. Unless you were actually bleeding, we would not recommend holding blood thinners for 72 hours. For someone on lovenox, we convert to unfractionated heparin a week before delivery, hold it as soon as labor begins (its duration of action is only a couple of hours) or caesarean is planned, and restart it immediately after delivery. The risk of heparin is excessive bleeding if you have epidural anesthesia or surgery; the risk of not taking it is clot and embolus, so it is prudent to minimize the length of time off anticoagulation. It’s always a tough call when exactly to restart. Without knowing all of the details, I can’t answer the “is it safe” question precisely. We don’t usually recommend inferior vena cava filters (that would prevent another saddle embolus) because they tend to clot themselves, but they can be used on a temporary basis and might be something to consider in another pregnancy.” It is best to consult with your treating physician so they can better advise. If you wish to receive care at HSS, please contact our Physician Referral Service at 877-606-1555 for further assistance. For more information, visit http://www.hss.edu/physician-referral-service.asp.

Mk1990 says:

Hi

I have been trying to get pregnant since 2 and a half years with almost no luck. I have pcos but not severe . I have done clomid rounds, IUIs 4 times and 4 times ICSIs. None has ever got me a single BFP on pregnancy test.

I did an antibodies test and my protein C, protein S and Lupus are all normal ranges.

only my Anti B2 Glycoprotein I IgG was 4.2 U/mL. and normal reference range is 0-4. Kindly help me how to go about with this.

Usually after my embryo transfer i start taking Prednisolone 10 mg daily. I wanna know if i can conceive naturally? Does this antibody kill off my embryos? I also want to know whether when trying normally each month i should take prednisolone so maybe i get pregnant naturally.

I am only 23 and we always transfer good amount of embryos and yet no luck

Please HELP

HSS on the Move says:

Hi, thank you for reaching out. Dr. Michael Lockshin, Rheumatologist, says: “That is a difficult story. Unfortunately, that low level Anti B2 Glycoprotein 1 lgG would not explain your infertility. Although there may be some reasons to take prednisone, that antibody is not one of the reasons.” It is best for you to consult with your treating physician so they can better advise. If you wish to receive care at HSS, please contact our Physician Referral Service at 877-606-1555 for further assistance. For more information, visit http://www.hss.edu/physician-referral-service.

Kate says:

I was diagnosed with Anticardiolipin Syndrome in high school. I’m now 23 and married. We’re not planning on having kids yet, but we worry if I accidentally get pregnant while on warfarin it will be too late for the baby. I have heard there is a range of time before the meds touch/harm the baby. Is this true, or do blood thinners affect the baby right away? I asked my specialist and she wasn’t sure.

HSS on the Move says:

Hi Kate, thanks for reaching out. Dr. Michael Lockshin, Rheumatologist, says: “I can give you good news here. It is safe to stop warfarin as soon as you suspect you are pregnant (switching immediately to low molecular weight heparin, usually Lovenox). You will have to work with your doctors about how to do this but it is not difficult. Some people will switch to low molecular weight heparin while trying to conceive, but because this might take up to 6 months or more, we do not advise doing it this way.” It is best for you to consult with your treating physician. If you wish to receive care at HSS, please contact our Physician Referral Service at 877-606-1555 for further assistance.

Jane says:

I take warfarin and was told in 2008 there would be a new version of coumadin coming out soon. This new drug is supposedly safe to take while pregnant, and doesn’t harm the baby. Do you know any information on this “new coumadin” or when it will be available?

HSS on the Move says:

Hi Jane, thanks for reaching out. Dr. Michael Lockshin, Rheumatologist, says: “There is no ‘new Coumadin.’ What you probably heard about are the types of oral anticoagulants now released as Xarelto and Eliquis (in the United States). There is no information to date whether they are effective in antiphospholipid syndrome and they are not approved for use in pregnancy, at least so far.”

sandra says:

I was diagnosed with APS recently after I came off 6 months of warfarin due DVT in my left leg. The DVT occurred ten days after a fall with sprained and broken ankle, and I had just completed a mock cycle for IVF treatment. I have seen 2 specialists that know about APS. Both agree I need heparin and aspirin if I get pregnant in a month with donor egg…but neither felt I needed thinners unless I do get pregnant. There is a site called health unlocked where other APS patients have emailed me telling me I am crazy not to be on thinners and am doomed to have a stroke or a clot again. Does anyone that has APS NOT have another clot or stroke when not anticoagulated or is it a given that I will eventually have another incident? Am I crazy to go thru pregnancy at 43 with this issue? I am scared of a late term miscarriage or still birth. But I”m also scared of all these scary near death stories of women that chose to carry a baby with APS. Feeling so overwhelmed.: (

HSS on the Move says:

Hi Sandra, thanks for reaching out. Dr. Michael Lockshin, Rheumatologist says: “Thank you for your question. Your situation is somewhat complicated. There is an ongoing discussion among doctors in the APS field whether or not “triggered” clots require lifelong anticoagulation. A clot occurring after an injury and IVF cycle would be considered “triggered.” Your doctors (who say you do not need lifelong anticoagulation) are thinking the way we do, but we would add a few warnings. First, we do recommend staying on aspirin. Second, many of us recommend hydroxychloroquine as well, though studies to verify this adds benefit are just now underway and not complete. Third, we do pay some attention to the type and quantity of antiphospholipid antibody: those patients who have high titer (a large amount) of antibody and/or lupus anticoagulant merit a more aggressive approach than do those with low titer and no lupus anticoagulant. Finally, if your leg did not fully heal, and you have ongoing swelling (edema) or extensive varicose veins, you are more likely to develop recurrent clot in that leg, so you should take that into consideration as well. Pregnancy does not change the recommendation, but we do recommend that patients continue anticoagulation for 12 weeks following delivery, because the risk of new clot is fairly high after delivery. The risks of pregnancy at 43 years old are different from the question of risk for blood clot. You and your doctors should consider your weight, your blood pressure, your kidney function, and whether you have diabetes or smoke, since these issues may add your risk as well.” For more information on APS, click here: http://www.hss.edu/condition-list_antiphospholipid-syndrome.asp#.U5hU7XJdXTo. If you wish to receive care at HSS, please contact our Physician Referral Service at 877-606-1555 for further assistance. For more information, visit http://www.hss.edu/physician-referral-service.

Asma says:

Hi! i am adoctor myself.. I have one son who is now six years old. after him, i conceived two times but ended in misscarriage in first trimester. i want to do work up for this.. just want to ask if i ve a normal baby once, can i still be a patient of antiphospholipid antibody syndrome and should i get myself to be investigated for it.. thanks

HSS on the Move says:

Hi Asma, thank you for reaching out. Dr. Michael Lockshin, Rheumatologist, says: “A normal child does not exclude antiphospholipid syndrome. On the other hand, 2 early miscarriages is not terribly suggestive, particularly if you lost the pregnancies before heartbeat was determined. If you lost the pregnancies after heartbeat, it would be low priority, but not zero priority to check antiphospholipid antibody. If you do, anything other than strong positive is ignorable.” It is best for you to consult with a treating physician. If you wish to receive care at HSS, please contact our Physician Referral Service at 877-606-1555 for further assistance.

vikram says:

I am 36 and married since 5 yrs. Had a blighted ovum 6 months ago, conceived again – there was cardiac activity, etc at 8 weeks (GA 6w3d), but at week 12 had spotting, checked, baby had stopped growing 4 weeks ago. Could this be APS? (we had 2 medical termination of pregnancies in our first and second year of marriage)

HSS on the Move says:

Hi Vikram, thank you for reaching out. Dr. Michael Lockshin, Rheumatologist, says: “You do not give me enough information for me to answer your question. From the way we count, you have had one late embryonic fetal loss, since neither the terminations nor the blighted ovum count. This in itself would not raise suspicion of APS, and you do not tell me if anyone did the blood tests for APS. They would have to be clearly positive to consider APS further. My best guess is that stopping the aspirin was coincidence.” It is best for you to consult with your treating physician. If you wish to receive care at HSS, please contact our Physician Referral Service at 877-606-1555 for further assistance.

drbhuvana says:

I lost my son in 3 days c section.feeling like hell.i want to conceive again as soon as possible but doc ask me to wait for 3 months.i am in confusion.

HSS on the Move says:

Hi, thank you for reaching out. Dr. Michael Lockshin, Rheumatologist, says: “Your doctor just wants to be sure you have healed well from the C section and the other effects of pregnancy, including your sense of devastation, before you become pregnant again. That’s good advice, but not medically a critical issue. On the other hand, you generally are not fertile immediately after delivering and may not be so until 3 months, so whether you try now or later, probably will not make a difference.” It is best for you to consult with your treating physician. If you wish to receive care at HSS, please contact our Physician Referral Service at 877-606-1555 for further assistance.

yancy says:

Hi! My name is Yancy, 34 yrs. old….i had 3 miscarriage, 1st and 2nd one is blighted ovum, 3rd one is with embryo but no fetal heartbeat…at 11 weeks i miscarriage again….i want to have an APAS TEST, it is possible that it will turn to positive?i read all your comments here…hope you can help me? Thank’s in advanced….

HSS on the Move says:

Hi Yancy, thanks for reaching out. Dr. Michael Lockshin, Rheumatologist, says “Hello, there. Sorry to hear about your miscarriages. Yes, the test can turn positive even if it has been negative before, but usually it is positive the first time it is tested. (We think that the antibody appears long before any pregnancy problems occur.) On the other hand, blighted ovum is a different reason for a miscarriage. It means the baby did not form correctly; it has no relationship to antiphospholipid antibody. Also, embryos that do not develop a heartbeat are not likely to have antiphospholipid antibody as a cause. In other words, you ask whether your test can become positive (the answer is yes), but it is likely that your miscarriages were due to some other cause. I hope this does not confuse you. Feel free to ask again if my answer is not clear.” For more information on APS, click here: http://www.hss.edu/condition-list_antiphospholipid-syndrome.asp#.U9j3cuNdXTo. If you wish to receive care at HSS, please contact our Physician Referral Service at 877-606-1555 for further assistance.

yancy says:

Thank you very much for your reply….my dotor advised me to have a APAS test, i never had an APAS test before… but you said that blighted ovum is not related to APAS..what is other cause why i always miscarriage?if i turn negative to APAS…so very confuse about my situation, i want to have baby….i’m already 35 getting older but no baby at all..pls. help me….

karla says:

Hi I am 42 and wondering if its too late for another pregnancy?,have had 6 miscarriages previously then one full term birth and twins born at 29 wks who are now 5.I hope it gives people on here hope,i feel extremely lucky but I am so broody I cannot stop thinking about another!,are the risks too high?,i have a balanced translocation too but it seems that either results in miscarriage.do the risks increase with age?

HSS on the Move says:

Hi Karla, thank you for reaching out. Dr. Michael Lockshin, Rheumatologist, says that “42 is not ‘too late’ for pregnancy, but fertility is low at that age. However, risks for pre-eclampsia (high blood pressure and other complications) are higher at your age. I would have to know a great deal more about you to know what might be ‘too high,’ for instance your blood pressure, kidney function, and other medical problems. If you have not had blood clots, you do not need to take heparin (when you are not pregnant) or other anticoagulant. Many doctors now feel that hydroxychloroquine (plaquenil) is helpful for patients, even if they have no symptoms. A clinical trial is now underway to answer the question whether what doctors feel (about hydroxychloroquine) is, in fact, true. (The balanced translocation is not relevant to APS or the above conversation, except insofar as further losses, if they occur, may further damage your mood.)” It is best for you to consult with your treating physician. If you wish to receive care at HSS, please contact our Physician Referral Service at 877-606-1555 for further assistance.

Sanja says:

Hi..I am 28 and I had a stillbirth in 36 week of pregnancy but reduced movements of my daughter since 34. The doctor suspected in umbrical cord accident or a blood clot. In my pregnancy I made blood teost but not Aps test. D dimery and antyphospholipid antybody was fine. Now I am pregnant again and i am 10 week . In 6 week i made aps test and the result was LA positive. After i get the eesult i went in another labaratory that was 2 weeks after and the result waa negative. Now i am on teraphy aspirin 100mg in the morning and clexane 40mg at nighy. I am not sure if i have LA i am scares and confused. I dont want to lose this child also and i dont know if i dont have LA the medication will harm my baby. I am so depeessed. My firs pregnancy was peerfectly normal until34week. My baby haa strok

HSS on the Move says:

Hi Sanja, thank you for reaching out. Dr. Michael Lockshin, Rheumatologist, says: “With a cord accident, your daughter would have been normal size, and with antiphospholipid antibody as a rule, she would be undersize. If you were taking heparin (clexane) when the LA test was done, it could give a false positive result. Since the test can (but does not usually) change, I can’t tell from the information you give whether you do or do not have LA. (I assume the test for anticardiolipin or antibody to beta-2-glycoprotein 1 was negative. If either was positive, it is likely you do have LA. I assume as well that you do not have lupus.) Either way, the aspirin and heparin (clexane) are not harmful to the baby. In fact, they protect the pregnancy if you do have LA.” It is best for you to consult with your treating physician who is familiar with your course of treatment. If you wish to receive care at HSS, please contact our Physician Referral Service at 877-606-1555 for further assistance.

karla says:

Thankyou for your reply ,Sorry I didn’t make it clear I have APS,i took heparin 5000 through each successful pregnancy plus asprin 75mg,and unsuccessful ones I can only assume were due to the translocation.My question really was does APS get worse with age and this therefore increase the risks?

HSS on the Move says:

Hi Karla, thank you for reaching out. Dr. Michael Lockshin, Rheumatologist, says: “No, APS does not get worse with age. While risks for any pregnancy are a bit higher for a pregnancy at, for instance, 40, than they are at 25, the increased risk is not due to APS.”

Becky says:

Hello,
My name is Becky. I was actually dx with APS at Cornell and saw a rheumatologist (a fellow Dr. Ramsden) that worked with Dr. Lockshin at HSS. I was a participant in the Promisse study in 2 of my pregnancies. I have since moved to Texas. After a loss at 23 weeks gestation in NYC I was dx with APS. My 2nd pregnancy was successful on prophylactic lovenox and baby asa. I delivered at 37 weeks. My 3rd pregnancy I developed a clot in my tongue after finding my anti 10a level (prophylactic dose) was sub therapeutic. Following this My baby was delivered at 35.5 weeks due a low platelet count. Postpartum I developed a small DVT and PE. I was on a therapeutic dose of lovenox but think I may have missed a dose or 2 (although I’m not positive). My OB in San Antonio thinks it’s too risky to get pregnant again due to the PE but will leave the decision up to me. i really would like to get pregnant and feel that if I’m on therapeutic lovenox, asa, and hydroxychloroquine throughout the pregnancy, I could have a safe pregnancy without a PE. What do you think about an IVC filter? I am very interested in the possibility of getting one of those? Is it often used in pregnancy? In your opinion could I have a successful pregnancy in my circumstance. I obviously know the risks are high but are they too high?

HSS on the Move says:

Hi Becky, thank you for reaching out. Dr. Michael Lockshin, Rheumatologist, says: “Hello! I remember you, and will say hello for you to Dr. Ramsden as well when I see her. ‘Too high’ is something that you will have to decide for yourself, but I agree that with careful monitoring of anticoagulation, together with aspirin and hydroxychloroquine, you should be able to complete a pregnancy without another pulmonary embolus. As a rule I don’t like IVC filters because they tend to get new clots on top of them if anticoagulation stops, and because the clots below block all blood flow, making the legs swell. We use them only in desperate circumstances.”

Becky says:

Thank you so much for getting back to me! It’s nice to hear from someone who is familar with my situation. Thank you for your input now and in my past, I appreciate it more than you know! Hope everything is going well in NYC!

Camille says:

Hi, my name is Camille. Have had 3 miscarriages previously, and now im 10weeks pregnant. I have done my APs test resulting, Sct 1.23*, DRVVT 1.32*, APTT 34.6, ACA IgG 2.3, ACA IgM 1.1.. im now taking baby aspirin as per my ob advised me. I always get worry everday for my baby,due to my miscarriage s, i wish you could help. God bless you!

Rochelle says:

Hi I am rochelle. I have 3 consecutive miscarriages for the past 2 years miscarriages happen before it reach the 3rd month… and I just found now out that im pregnant . But I have a 10 yrs old boy from my previous partner. Is it possible for me to have APS even though I already concieved and delivered? Thank you.

HSS on the Move says:

Hi Rochelle, thank you for reaching out. Dr. Michael Lockshin, Rheumatologist, says: “To answer your question, yes, it is possible to have APS even if you have delivered. It could have developed in the 10 years, or you could have been one of the lucky ones who has a successful pregnancy without treatment. On the other hand, only about 20% of women with 3 consecutive early miscarriages have APS. About half are never explained, and the other 30% are due to something else, like chromosome abnormalities, infections, and other things.” If you wish to receive care at HSS, please contact our Physician Referral Service at 877-606-1555 for further assistance.

AL says:

Dr. Lockshin, I’m 17.5 weeks pregnant presently. I have a history of transverse myelitis, fully resolved, 2007, lesion in C7. I have a positive ANA, positive rheumatoid factor, and the lupus anticoagulant present in blood tests. I do not have lupus or rheumatoid arthritis, as I lack symptomology. I have never had a blood clot and am being treated conservatively with 81mg of aspirin daily, with my prenatal vitamins, 50 mcg’s of synthroid (for a thyroid nodule- T3/T4 levels are normal), and vitamin D (am deficient). I was hoping you could provide a brief opinion about receiving an epidural during delivery? I am concerned as I have read that this anticoagulant and my history of TM would rule out an epidural- and possible an epidural could trigger a relapse of TM. I have never had a blood clot, so I’m not certain if the presence of the antibody alone is enough to warrant avoiding epidural. I am in Washington, DC, and see a variety of treatment providers here. My neurologist for TM is Dr. Ted Rothstein at GWU, I have seen a hematologist, a rheumatologist, and am seeing a high-risk OB at GWU. However, none have been able to give me a definitive yes, go ahead with an epidural, or no, it’s more risky than reasonable. I would appreciate it if you could give me your opinion. Thank you very much for your time. I know it’s very valuable.

HSS on the Move says:

Hi, thank you for reaching out. Dr. Michael Lockshin, Rheumatologist, says: “Congratulations on your pregnancy. Do you know the details of your lupus anticoagulant? In most cases, it is responsible for excessive clotting, not hemorrhage. Usually you can tell this by seeing an abnormal aPTT (activated partial thromboplastin time) and a normal PT (prothrombin time). In that case, there is no added risk to an epidural. If, however, the PT is abnormal, it suggests an antibody to prothrombin, which can lead to excess bleeding. It can be corrected with corticosteroid therapy (prednisone), but it takes a few weeks to do so. In other words, if both the PT and aPTT are high, epidural might be dangerous; if only the aPTT is high, it is not. (The term lupus anticoagulant is a misnomer based on what happens in a laboratory test. The usual antibody, that is, one not accompanied by an antibody to prothrombin, does not prevent clotting.) Most anesthesiologists do not like to place an epidural if you are taking antiplatelet agents, such as aspirin, for fear of hemorrhage. Stopping the aspirin for at least 72 hours suffices to remove this concern. I don’t know of any evidence that says that transverse myelitis will recur if you have an epidural, but I don’t have evidence the other way either. TM is rare, and epidurals in patients with TM are very rare- or at least not reported upon in the medical literature. You and your neurologist will have to negotiate that aspect of your illness between yourselves. Finally, I caution all my pregnant patients not to plan too rigidly for delivery. Circumstances can change very quickly as you get to term; it may not be possible to have your baby in exactly the way that you plan, so being flexible is best. Hope this helps.” If you wish to receive care at HSS, please contact our Physician Referral Service at 877-606-1555 for further assistance.

Maria says:

Hello. I am Maria I am 35 years old and got a mc 5 months ago, the dr suggested to do the APS exam since my sister has and it turn to be positive. Started taking one month ago low dose aspirin and now I am 4 weeks pregnant my hcg levels are very low 44 ,so the dr asked me to do them again haven’t got the results yet , question: shouldn’t I be using heparin already or should I had used heparin before ? Is it too late for treatment? Hope you can help I am from Ecuador and here medicine is good but not as updated as in the us. Best regards!

HSS on the Move says:

Hi Marla, thank you for reaching out. Dr. Michael Lockshin, Rheumatologist, says: “You should start heparin as soon as you know you are pregnant. However, with very low HCG levels, it may be that this baby is not going to grow well. It is very early to see the effect of antiphospholipid antibody, so what is happening to the current pregnancy may not be related to the antibody. However, it won’t hurt to start heparin now, until you see what will happen.” It is important that your consult with your treating physician to determine the best course of treatment. If you wish to receive care at HSS, please contact our International Center at 212-606-1186 or by email at international@hss.edu. To learn more about the International Center at HSS, please visit http://www.hss.edu/international-center.asp.

Rachel says:

I am 31 with two boys and a 7 year age gap. I was diagnosed with APS after suffering a series of miscarriages. I now only have 1 Pylopian tube due to an ectopic pregnancy, I finally fell pregnant with my second child and managed to go full term and had a beautiful little boy but since then I have been unsuccessful in even falling pregnant.
I have now starting taking aspin again and a pregnancy vitamin supplement but is there anything else I can do to help.
What are my chances of conceiving with only one tube ?

HSS on the Move says:

Hi Rachel, thank you for reaching out. Dr. Michael Lockshin, Rheumatologist, says: “It is not very likely that antiphospholipid antibody is the reason you have difficulty with pregnancy since the antibody is more likely to cause miscarriages than infertility. Also, if the remaining tube is functioning normally, you should be able to become pregnant. Thus I think it is likely that the antiphospholipid antibody is not a problem. You should consult with your fertility or obstetrics physician to determine other possible reasons why you cannot conceive.”

ritu says:

hi doctor, my apa test come out to be nagative.but still doctor refer me to take aspirin and heparin injection.is it right.also i had a previous miscarriage

HSS on the Move says:

Hi Ritu, thank you for reaching out. Dr. Michael Lockshin, Rheumatologist, says: “When you say that your APA test was negative, you do not specify which test was done. There are 3, a lupus anticoagulant test, a test for antibody to anticardiolipin, and a test for antibody to beta-2 glycoprotein one. If all 3 were done and were negative, and if you do not have a different type of clotting disorder, and have not previously had blood clots, then there is not an obvious reason to use heparin and aspirin. Some obstetricians feel that this treatment should be given to anybody who has had a pregnancy loss, but I do not.” It is best to consult with your treating physician. If you wish to receive care at HSS, please contact our Physician Referral Service at 877-606-1555 for further assistance

Amanda Huffman says:

Hello Dr. I was diagnosed with APS this year during my second pregnancy, at approximatrly 17 weeks ga based on lmp, after an abnormally high AFP quad screen result and subsequent testing. I don’t have my numbers but my lupus and cardiolipin were elevated. I was started on baby aspirin and 40 mg of generic lovenox daily. The baby has increased from the 10th percentile to 25th and echocardiogram, nsts and biophysical profiles have all been good. My blood pressure is consistently 105/60 and CBCs, CMPs and all other blood work has been completely normal.
My first child was delivered via c section after failed induction due to pre eclampsia. My desire was to attempt a VBAC however my MFM is dead set on a scheduled section at 38 weeks. My OB, however, is willing to let me attempt to wait until term for labor to start on its own, assuming all tests and labs remain good.
I was wondering if you have any resources you could direct me to that analyze the risks with both cesarean sections and VBACs in patients with APS or other clotting disorders. I would like to educate myself, and open a more thouroghly researched discussion with both of my physicians.
Thank you in advance for any information that you can provide.

HSS on the Move says:

Hi XX, thanks for reaching out. Dr. Michael Lockshin, Rheumatologist, says:” I am glad to hear that things are going well. The choice between spontaneous and induced delivery is argued a lot among Obstetricians; I’m not aware of any good science that argues for one or the other in patients with APS. Those who argue for induction at 38 weeks are worried about last minute complications, which are not common. The thinking is: the baby is term now, let’s get into delivery now while we know the baby is healthy. Those who argue for spontaneous (or vbac) delivery know that late problems are uncommon (not impossible), and believe that natural delivery is healthier for mother and child.” If you wish to receive any care at HSS, please contact our Physician Referral Service at 877-606-1555 for further assistance.

Chrisie says:

Hello, not sure if this website is still open to replies but just thought I’d see. I have been diagnosed with APS recently. I have a 7 year old who was born at 29 weeks due to preeclampsia and reverse end diastolic flow. It was a perfectly normal pregnancy up until the days before I delivered. The only thing I took was a normal prenatal vitamin. My second pregnancy just ended at almost 25 weeks. At 20 weeks babies growth was 1.5 weeks behind. At 24 weeks baby was measuring 4 weeks behind and we were told we had reverse end diastolic flow. We planned to keep monitoring but at the next check a few days later my bp was 170/100 and suddenly I had high levels of protein in my urine. I was admitted that night and monitoring of baby showed she was in distress. She was delivered and only 11 oz at 24 weeks 5 days. We knew about the APS this pregnancy. I started lovenox .3 twice a day at 5 weeks. Around 13 weeks they started me on baby aspirin and changed my lovenox to .4ml once per day. I also took folgard prior to pregnancy and all during. I am taking synthroid since before pregnancy. Before pregnancy I also took methyldopa for high bp. Around 18 weeks I switched from methyldopa to labaletol because my bp was consistently 140/90 the whole pregnancy. I have now had two pregnancies end with preeclampsia and reverse end diastolic flow. The first pregnancy we took no meds and made it to 29 weeks and now have a healthy 7 year old. 2nd pregnancy we did everything we thought we could and the outcome was worse. My question is: would there be anything else we could do during a 3rd pregnancy? Could I take baby apsiprin prior to pregnancy? If I got my bp totally under control without medication before getting pregnant would it help? I tend to have high bp when a little overweight. I was 20 lbs heavier in my second pregnancy and taking bp meds. I read that you use something called intravenous immunoglobulin? Is that something I could try? Is there ANYTHING I could do? Start lovenox after ovulating? We want another baby so badly but feel like we did everything possible and had a better outcome when we didn’t do anything. Please help! Thank you!

HSS on the Move says:

Hi Chrisie, thank you for reaching out. Dr. Michael Lockshin, Rheumatologist, has responded to your question, he says: “What you describe sounds like APS-associated problems. It does not always recur, but we cannot tell which pregnancies will go well and which will not. That said, we have used intravenous immunoglobulin in this setting, beginning as soon as pregnancy is confirmed (0.4 G/KG once monthly), with success. This treatment is not dangerous, but it is considered experimental , and many insurers will not pay for it (some do)–it is expensive. We do keep patients on Aspirin, And we start a Heparin drug (usually lovenox) as soon as a pregnancy test is positive or a period is missed. There are other experimental treatments under trial, but they are not generally available. Your blood pressure should be monitored as well as your kidney function. It is very important to have your Blood Pressue under very good control.” It is best to consult with your treating physician who is familiar with your medical history. If you’re interested in receiving care at HSS, please contact our Physician Referral Service at 877-606-1555 for further assistance

Chrisie says:

Thank you so much for your response. I realized that I forgot to mention that with this pregnancy It was also discovered at 16 weeks that I had a single umbilical artery. It seems to me that could have worsened the situation I had with the APS and if there was only one artery instead of 2 that had to make things worse. Could the SUA combined with the APS made things worse? I didn”t have SUA with my 7 year old but did have preeclampsia and reverse end diastolic flow, but I made it to 29 weeks with growth only a little behind. 2lbs 2.3 oz. Would my pregnancy have stood a better chance without the SUA and since it isn”t Likely to happen in a future pregnancy could that pregnancy be successful ?

Thank you!

menka says:

Hi I had miscarriage at 17 week 2 day in 2013 and again at 9 week in Feb 2014 missed abortion currently im pregnant 23 week diagnosed antib2 glycoprotien antibody 1 igm positive titre 12 also homocystiene raised I”m on aspirin n heparin n progesterone from 16 week onward multiple time my lower abdomen get hard n v uncomforrtable in this week too much is I”m going in preterm labour I”m really scared this time finger crossed I heard that I”m prone for preterm labour so far growth of baby OK colour Doppler OK n amniotic fluid normal plz help me I”m really scared

HSS on the Move says:

Hi Menka, thank you for reaching out. Dr. Michael Lockshin, Rheumatologist, says: “The anti-beta 2 glycoprotein 1 antibody is not very high at all, and the facts that the baby is 23 weeks and normal size, the Doppler is OK, and the amniotic fluid OK are all very good news. The antiphospholipid antibody does not cause pre-term labor unless the baby is very small, so I don’t think that is something to worry about. If you are having signs of labor, it is due to something else. Sometimes early contractions are more or less normal (Braxton-Hicks contractions), and sometimes they mean something else, like fibroid tumors in the uterus. Your obstetrician should be able to figure this out. In any event, the baby’s growth so far is the best predictor that things will turn out alright.” It is best to consult with your treating physician who is most familiar with your medical history and treatment plan. If you wish to receive care at HSS, please contact our Physician Referral Service at 877-606-1555 for further assistance.

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