Your Lupus Questions Answered
Q1. I’ve had lupus for about 7 or 8 years. Last was really the first time I had a flare up in years. They found 3 blood clots, kidney failure and congestive heart failure. What can I do to help? I’m so tired all the time.
Lupus is a complicated disease in which the body’s immune system attacks other tissues in the body, causing injury and inflammation. This inflammation, if it is in the joints, it shows up as an arthritis flare with joint swelling and pain. In the skin a flare manifests itself as a skin rash. Sometimes, tissue inflammation may not be so apparent. For example a flare in the kidney may remain silent, until someone does a urine test and finds protein or blood in the urine. Over time inflammation that remains untreated may cause a scar or damage to the tissue and this may not be fully correctable. Therefore, a key message for everyone with lupus is that there should be regular follow-up and communication with their rheumatologist in order to allow timely treatment of flares as much as possible. Blood clots may occur in lupus as a result of inflammation in the blood vessels as well as a result of the antiphospholipid syndrome (APS) that often coexists with lupus. Other risk factors, such as recent surgery, or oral contraceptives, if present, may make it easier to develop a clot in such a situation. The symptom of being tired may be due to flare of lupus, but could also result from coexisting fibromyalgia, or other conditions, such as kidney failure, congestive heart failure, and hypothyroidism. Patients should be treated according to the specific problems they have, in other words therapy should be tailored to each patient’s unique situation.
Q2. I was just diagnosed with Lupus and I asked my Rheumatologist a question (I am going to a clinic right now) and he told me he could not answer my question in 15 minutes! Shouldn’t they be concerned with this illness and answer patients questions? I also have APS.
Antiphospholipid syndrome (APS) may coexist with lupus and in that case we call it secondary APS, instead of primary APS (when it exists only by itself). Most patients will have the antiphospholipid antibodies (aPL) without having a blood clot or pregnancy complication. In that case there is no APS, but only aPL. You can request information material about lupus from your doctor or nurse, as well as access more information about lupus in our and other trustworthy websites. Lupus support groups are also available to help patients educate themselves and cope with their disease better. One very helpful resource can be the link below. HSS Lupus Programs
Q3. What kind of testing/results have come from treating nephritis with Benlysta?
Benlysta, or belimumab, is a monoclonal antibody that binds and blocks the action of BLyS. BLyS is an immune system protein that in lupus is at abnormally high levels in the blood and makes it easier for “bad” B-cells to produce antibodies that attack the body itself (autoantibodies). So belimumab puts a break in this destructive mechanism and helps patients with lupus. The drug’s benefit was shown in 2 large clinical trials, BLISS-52 and BLISS-76 and this has led to the approval of belimumab by the FDA in 2011. Both of these trials studied lupus patients that had active disease in the joints, skin, etc, but excluded severe forms of nephritis or severe lupus affecting the brain and spinal cord. Therefore, we cannot be sure whether or not belimumab works in such situations. Nevertheless, there are some encouraging signs that this drug might work in patients with mild forms of nephritis that did make it to the trials. However, until we have more information on this matter, we cannot recommend it for severe lupus nephritis.
Q4. Have you seen any research on SLE and recurrent oligohydramnios in pregnancy? I lost my first child at 37 weeks after having oligohydramnios and nearly lost my second child at 36 weeks to the same problem.
SLE (systemic lupus erythematosus) may cause many complications in pregnancy. Some may be related to the presence in the mother of anti-Ro/anti-La (or anti-SSA/SSB) antibodies, others to the presence of antiphospholipid antibodies (aPL), and others to active lupus itself, especially in the kidney. Pregnancy losses may be due to the rare severe heart blocks that may occur as a consequence of anti-Ro/La antibodies, and blood clots in the placenta as a consequence of aPL. Although oligohydramnios (insufficient amount of amniotic fluid) have been associated with aPL and SLE, unfortunately there are not many data on this topic.
Q5. Can discoid Lupus turn into SLE?
Discoid lupus refers to the development of characteristic chronic (present for more than a few weeks) red thick and scaly skin lesions on the scalp, face, ears, and neck. On occasion, they may be more widespread and extend to the upper back/chest and other parts of the body. These lesions typically heal by leaving a scar behind and in the scalp often permanent hair loss. Up to 20% of SLE patients may have discoid lesions. Discoid lupus in many cases remains in the skin without involvement of other organs, and therefore it never evolves into SLE. Only 5-10% of discoid lupus patients will progress to SLE at some point in their life and even if they do so, often the disease remains mild. Progression is most likely to occur in those patients with the more widespread skin involvement.
Q6. Does SLE cause benign growths?
Hypertrophic discoid lupus as well as lupus tumidus may appear as benign skin growths. Swollen lymph nodes (glands) may occur during a flare of the disease and look like growths. Finally, SLE patients may get any type of growth that other patients may get.
Q7. I was diagnosed with lupus SLE in 2002, been in remission since 2005, but hypothyroidism started in 2006 and vitiligo 2007. I know these are all auto-immune issues, would the hypothyroidism or vitiligo simmer down if I were to get back on the lupus meds (hydroxychloroquine)? Also, I have my son’s umbilical cord blood banked and would like to know if there are treatments or studies that use these type of stem cells to try to treat my auto-immune issues?
SLE on occasion may overlap with other systemic autoimmune connective tissue disorders such as Sjogren’s syndrome, scleroderma, rheumatoid arthritis (RA), and inflammatory myositis. In those cases features of lupus as well as of one or more of these other diseases coexist. Interestingly, different family members may have different connective tissue diseases, for example one may have rheumatoid arthritis and another lupus. This is perhaps because of common autoimmunity genes that increase risk for all of these diseases. Besides the systemic autoimmune diseases, such as lupus, RA etc, there are other autoimmune diseases that are organ specific, such as hypothyroidism due to Hashimoto’s disease that only targets the thyroid gland, or vitiligo that targets the skin. Practically speaking, we treat only when there is evidence of active disease. Although treating for one systemic autoimmune disorder would in general improve symptoms form another overlapping autoimmune disorder, this may not be the case for the organ specific autoimmune disorders. Certainly, we would avoid aggressive therapy for lupus just to treat vitiligo or Hashimoto’s. Hydroxychloroquine is a less aggressive medication, but I would also avoid if it was to be used just to treat these other organ specific disorders. Regarding stem cells, these could be used in cases of very severe lupus in centers that are experienced in such stem cell transplant procedures.
Q8. I was diagnosed with lupus SLE in August 2010. I hurt a lot in my hips and lower back and knees. But I was also diagnosed with asthma last week. Does lupus have something to do with it? It took me a long time to get over it.
Asthma is a common disease and could coexist with lupus just by coincidence. Although steroids work for both diseases, other therapies are different. One needs to treat carefully for both problems.
Q9. I guess I’m also wondering if you have heard of any women having problems with getting pregnant or keeping a baby after being on the new drug benlysta. I am 24, caucasian and my doctor thinks I’d be a great candidate. We are both just nervous about the long term effects. I’m only 24. What are your thoughts?
The drug has not been tested in pregnancy, so most doctors would avoid it in that setting. However, after stopping the medication for at least a few months, it should be fine to get pregnant, as the medication would be out of the system by that time.
Q10. I was diagnosed with lupus about 11 yrs ago I’m 21 yrs old about to turn 22 in March and I have been with my partner for going on 3 years and was just wondering what possibilites I have to get pregnant and stay healthy? I’m currently on 400mg plaquniel 15mg prednisone & 100mg imuran. Are those meds ok to stay on or would i have to be off of them? What’s the process?
Yes these medications are considered safe during pregnancy. However, we would prefer a lower prednisone dose, if possible, without risking a flare of the disease. There should be no problems with fertility. Before you get pregnant, you should plan ahead with your rheumatologist, to make sure your disease is stable enough and you are ready to proceed. Otherwise, pregnancy might trigger a flare of the disease that may have serious complications. You should also discuss your general health status (i.e cardiovascular and kidney health) as well as autoantibodies such as anti-Ro/La, and aPL (see question #4, above).
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