Ask the Expert: Dr. Kyriakos Kirou Answers Your Questions About Lupus & Lupus Nephritis – Part II

by Dr. Kyriakos Kirou
Dr. Kyriakos Kirou, Rheumatologist

Q1. I often hear of people with Lupus Nephritis being older, is it odd that I happened to show the signs and effects at an early age (14)?  Also, I’ve already had 2 kidney transplants – 1 cadaver & 1 from my mother, both of which failed.  I have been told the failures were due to Lupus flares.  Is this common and what implications could that hold for me possibly getting a 3rd transplant?  Dialysis is not fun for anyone, but it is especially horrid for someone who is only 28 years old, in remission and otherwise healthy.  I’d hate to think the odds of this being my life for the next ___ amount of years; or worse dying due to the fact that we weren’t meant to be on dialysis permanently, knowing that if I take care of my Lupus I could live a potentially long and productive life.  

Although lupus typically affects women in their reproductive years, it may affect children as well and the disease may be more severe in those cases. Lupus nephritis is one of the most challenging conditions due to lupus, and unfortunately may lead to kidney failure and need for dialysis. Lupus nephritis, therefore, should be treated aggressively and timely to preserve as much as possible kidney function. In addition, because relapses (new flares) of nephritis are not uncommon, regular medical follow-up is required in order to detect a relapse as early as possible. Kidney transplants for lupus nephritis may have the same complications that kidney transplants may have for any other condition, such as rejection, infection, etc. In addition, antiphospholipid syndrome, if present, needs extra careful management with anticoagulation to prevent blood clots in the transplanted kidney. Flares of lupus nephritis, although they may occur, are in general not very common after a kidney transplant, partly because the immunosuppressive medications used to prevent rejection, also suppress lupus.

Q2. My lupus mainly affects my skin (worst lupus rash I’ve ever seen), joints, muscles, often I get pleurisy, and I also have some spots on my brain and lungs, cysts and scarring i think, that everyone says not to worry about. Are these from my lupus, and could anything come of these later? Also, the big flare that resulted in my diagnoses of lupus showed some abnormalities in my labs, the ana and antiphospholipid antibodies, etc, but no extreme changes and I wad very very sick. We thought I was going into remission because my labs are close to normal now but I’m hurting more and more and the rash.

As you point out, lupus can affect all body organs. Normal lupus labs such as normal complement levels, low levels of anti-dsDNA antibodies are all good signs that the disease is, or will soon be under control. However, a small proportion of patients may have active lupus despite normal complement levels. The treating rheumatologist will usually be able to tell whether the disease is active or not, by examining all the clinical information available. Sometimes, it is hard to tell the difference between joint pain or fatigue due to lupus as opposed to fibromyalgia which often coexists with lupus. However, it is important to distinguish those as therapy is different. Skin rash usually indicate active lupus. However, some skin lesions are simply the result of past disease activity and damage or scars. A butterfly skin rash (malar rash) on the face, may be due to rosacea, seborrheic dermatitis, and not lupus. In some cases we need to do a skin biopsy to be able to tell whether a given rash is due to lupus. A good clue that a symptom is due to active lupus is the coexistence of other signs of the disease at the same time, for example skin rash, arthritis, and pleurisy.

Q3. I have SLE and I have had it since 1992. In 1993 it was affecting my kidneys, heart and lungs. I went on plaquenil and high dose steroids and then cytoxan. After 2 years it went into remission. I was diagnosed with fibromyalgia in the summer of 1994. I was diagnosed with sarcoidosis in 2003 which is affecting my lungs, lymph nodes and bone marrow. The imuran and steroids slowed it down. I have had multiple spine surgeries due to degenerative disc disease. My first surgery in 2005, then 2009. I just had my last spine surgery in Sept 2011 and I am still off work. They took me off my plaquenil because they told me it would stop or slow the process of the bone healing with my graft with the rod. My rheumatologist was very upset and could not find any data on this. Do you know anything about that data? I did stop taking it for that reason. I am a nurse who is off work and I need to support myself, my two kids and my husband who is disabled. My Lupus is very active again affecting my kidney with the nephrits again and my sarcoid and fibromyalgia is worse. I need to know what I should do the bone graft is not healing as fast and all of my medical conditions are making things worse.

I am not aware of data that plaquenil affects bone healing either. Your rheumatologist and orthopedist can discuss this again and reconsider this medication. Plaquenil is important for preventing lupus flares, although it is not very strong in putting those flares in control quickly. For fibromyalgia, please see previous question.

Q4. I was diagnosed with Lupus SLE 23 yrs ago. I’m 53 now. I had a heart attack in 2003 and now have 11 stents in my heart and one in right groin. Once a year is about as long as I can go without surgery. My new heart doctor is suggesting double by-pass next. My last heart doctor passed away but said he didn’t think I would make it thru the surgery due to the healing properties of the Lupus. My theory is the cancer eluding medicine wears off after about that time period. I wonder if I should try the chemo type medicine treatment instead of the Plaquinil? I also have four lesions on my brain with no explanations other than from the Lupus or Migraines from the past 2 yrs. They said it’s not shaped like MS. Also I was told no flu shots? What’s worse the shot which I haven’t been getting sick from or the flu getting you so sick you end up in the hospital? And the pneumonia shot? I had it for 1 yr at 30 and no one could diagnose it. The Lupus killed all my antibodies for me to fight it off. They gave me a shot and I have never had it since. So should Lupus patients take these shots or not? I truly believe I was born with Lupus because I was born with Asthma and was sick so much as a child. But didn’t get sick again till stress in my life around 23 yrs of age. Then again around 28 with the birth of my son and a stressful marriage. It went full blown for several yrs. till I went to a old Dr. I hadn’t seen in a while was on the Lupus Board in Houston and put all my aliments over the yrs. together did blood wk and I finally had something I learned how to deal with! I also need 13 teeth pulled and my heart Dr. won’t let me off the Plavix and aspirin for 1yr. now by then it’s time for more heart surgery. I and my GP are worried about endicarditis. What should I do?

Your problems point out a very important issue, that lupus patients, even if their disease is not active, may develop atherosclerosis in their arteries. Atherosclerosis is often the cause for a heart attack (myocardial infarction) or a stroke. This normally occurs late in life but in lupus it may happen much earlier. It is the result of active disease and inflammation of the blood vessels, but also due to glucocorticoids (steroids), hypertension (high blood pressure), kidney failure, and of course other factors such as high lipid levels, smoking and diabetes. Therefore, lupus patients should monitor closely their lipid levels, blood pressure and take medications, if necessary, to keep those under control. Plaquenil appears to offer some extra help for atherosclerosis as well. We generally aim to keep lupus under control using as little steroids as possible. The influenza vaccine given by intramuscular injection (shot) and the pneumonia vaccines are not made with live virus and therefore cannot cause infection. We recommend the “flu shot” (but not the one given through the nose) every year for our lupus patients, unless there are contraindications to it. The pneumonia vaccine is usually given once and then again after about 5 years. These vaccines should best be given when steroids are not taken in high doses, or else they may not boost immunity as they are supposed to.

Click here for Part I of this post.

Dr. Kyriakos Kirou is a rheumatologist at Hospital for Special Surgery and is Clinical Co-Director at the Mary Kirkland Center for Lupus Care at Hospital for Special Surgery.

Topics: Facebook Notes, Lupus, Rheumatology
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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

Susette Mauro says:

Dear Dr. Kirou, I have been diagnosed with Rosacea Granmulosus and although my doctor thought at one point that I was on the borderline with Lupus, they now say I am not and that I have an auto immune disease that they never give me a name for. The Rosacea is limited to my cheeks and forehead. It is affecting my eye as well….and it burns and hurts very bad. Would my symptoms thus far be reason to see a rheumatologist like yourself…as my good friend is a patient of yours. Thank you

HSS on the Move says:

Hi Susette, We’re sorry to hear you’re in pain. Dr. Kirou says, “Granulomatous rosacea is a rare form of rosacea which is not lupus. I believe it is best if you see another dermatologist, someone who sees more autoimmune and inflammatory skin conditions.” The American Academy of Dermatology may be able to help you find a specialist: http://www.aad.org/ or email us at socialmediacontact@hss.edu and we can recommend some in the New York City area.

Barbara Henry says:

Regarding CRMO.
I have a 13 year old granddaughter who has experienced bone lesions since age 8.
No definitive diagnosis has ever been received despite multiple MRIs, PET Scans, biopsies and consultations with orthopedic specialists at Columbia, MSK and a week long evaluation with metabolic bone specialist at Shriner”s.
She lives in Scarsdale, NY and would like to have a real diagnosis for these painful events that occur sporadically. Her mother and I have done Internet research and believe it might be CRMO. We have a suspicion they might occur following an exposure to an ordinary respiratory infection or common cold. Wondering if there is any research on this and wondering too if you would be able to give a definitive diagnosis or could make a referral to someone who could.
Thank you,
Barbara Henry

HSS on the Move says:

Hi Barbara, thank you for reaching out. Dr. Nancy Pan, Pediatric Rheumatologist, says: “An evaluation by a pediatric rheumatologist may help determine if CRMO is a possible diagnosis.” 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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