Hospital for Special Surgery and the S.L.E. Lupus Foundation hosted a Facebook chat on Lupus and General Health on May 14. Participants asked more than 160 questions, but our room full of experts could only answer 61 during the one-hour, live event. We categorized the remaining questions, and will post a series of Q&As. For our next installment, rheumatologist Dr. Kyriakos Kirou answered questions on co-occurrence of lupus and other conditions. Read the others in this series: lupus and the brain, diet and solar impact, pregnancy and exercise, and lupus and skin involvement.
The information provided is for informational and educational purposes, and doesn’t constitute medical or health advice for any individual problem. Please consult with your health care providers for any health problem and/or prior to starting any new medication or changing or discontinuing any medication you have been prescribed. This chat is not intended to create a doctor-patient relationship, or any other duty, between you and any member of the HSS interdisciplinary team or the S.L.E. Lupus Foundation.
Can SLE affect thyroid function?
I had thyroid cancer last year then was diagnosed with lupus. Can the cancer trigger lupus? Before that, I was fine, now I have all sorts of issues. I’m not even sure when I’m having a flare because I’m always so tired and in pain. What are the most common symptoms of a flare?
There is no clear evidence that cancer causes lupus. Lupus flares may cause many symptoms. Arthritis (joint pain, joint swelling and morning stiffness of the joints) and skin rash are the most common symptoms of a flare. Other symptoms include chest pain with deep breathing, fevers, swollen glands and tiredness. Sometimes certain blood tests will be associated (but not always) with a flare. These are the anti-DNA test and complement tests. Feeling tired is perhaps one of the least reliable symptoms to diagnose a flare, as it is very common (even in healthy people) and it may be due to many other reasons.
How common is a pulmonary arterial hypertension diagnosis with Lupus?
Pulmonary arterial hypertension (PAH) is rare in lupus. One study reported a 4.2% rate. We treat with the typical PAH medications, such as bosentan, sildenafil, treprostinil, etc., but we often also use immunosuppressive medications such as high-dose steroids, cyclophosphamide, and mycophenolate mofetil.
I had shingles last month. Will it happen again?
It may happen again. Shingles or herpes zoster is due to the chickenpox virus. The virus lives without causing trouble in the nerves of patients that had chickenpox earlier in their lives. However, when the immune system is suppressed with medications such as those used in SLE, the virus escapes control and becomes active again, causing shingles.
I was officially diagnosed with lupus 3 months ago. When I began having symptoms of lupus, I also began having angioedema. My rheumatologist does not think the two are related, but I only get the angioedema when I am having a flare. Any relation or two separate issues?
Angioedema is the swelling of the face (usually lips; tongue, etc). It is usually due to a severe allergic reaction or sometimes due to a genetic defect. Angioedema and lupus can be unrelated but lupus can definitely (but rarely) cause angioedema. Medications used to calm down lupus should also help angioedema.
I have lupus and have had chronic leukopenia for many years now (wbc is usually 2). Should this be a concern? I also want to get a tattoo but I worry that I will get an infection. Is it risky to get a tattoo with a compromised immune system and such a low wbc?
Leukopenia is very common in lupus, and does not cause infections. However, if the leukopenia is due to bone marrow suppression from one of the medications used for lupus, such as methotrexate, azathioprine, mycophenolate mofetil, and cyclophosphamide, then it definitely increases the risk for serious infections. Please also note that the risk of infection in someone with lupus is higher than someone else without lupus for mainly two reasons: the disease itself lowers the immune system’s ability to defend against infections and the medications used to treat lupus lower the immune system, even without causing leucopenia. So any invasive procedures such as a tattoo might increase the risk of infection in a patient with lupus.
I have Antiphospholipid syndrome with secondary diseases: SLE and seizure disorder. I have had four pulmonary embolisms and have been on coumadin and prednisone for years. Is there any hope for anything on the horizon?
Antiphospholipid syndrome, especially when in association with SLE, increases the risk of blood clots, such pulmonary embolism (PE). Coumadin (or warfarin) is an effective blood thinner medication to treat and prevent blood clots. However, coumadine works well only when its blood level is at a certain range. We measure blood levels of coumadine by the prothrombin time (PT) and INR. Coumadine levels are good when INR is between 2.0 and 3.0. If it is lower than 2.0, the risk for blood clots increases, and if more than 3.0, the risk for bleeding increases. Even when the INR is good, someone may still get a blood clot. In that case, and if the bleeding risk for the patient is not high, some experts advise to increase the INR (to levels between 3.0 and 4.0), while others advise addition of low-dose aspirin to the existing coumadine dose. Another option for anticoagulation (besides coumadine) is low molecular heparin such as enoxaparin (given by injection under the skin). Over the last few years newer blood thinners have emerged that can be taken by mouth and do not need monitoring of their blood level. These include rivaroxaban and dabigatran, but they have not yet been tested in antiphospholipid syndrome.
How common are lung transplants from pulmonary arterial hypertension caused by lupus?
I do not know; but probably rare. See above for more information on PAH and lupus.
Can hearing loss be attributed to lupus or the medications used to treat lupus?
Yes. Hearing loss can very rarely be due to inflammation of the hearing nerve due to lupus. Medications that can cause hearing loss include certain antibiotics (such as gentamycin), sildenafil, antimalarial drugs (such as chloroquine), diuretics at high doses (furosemide), aspirin and anti-inflammatory drugs at high doses.
How do you know if you have a secondary illness with lupus?
Lupus is often associated with other autoimmune diseases such as thyroid disease, immune thrombocytopenia, rheumatoid arthritis, systemic sclerosis, Sjogren’s syndrome, etc. Certain unique clinical and/or laboratory characteristics of these diseases will help your physician make the diagnosis. SLE may also be associated with fibromyalgia. The diagnosis of fibromyalgia is based on the clinical judgment of the rheumatologist, as there are no good laboratory tests for it.
People with lupus can have many allergies. Why do they get them and why do they keep happening if you are supposed to be on immune suppression?
The immune system has different ways (through different cells and different body proteins) to cause or control inflammation (such as in arthritis and skin rash of lupus) and allergies. So it is possible to control one of the two and not the other. Of all the medications, steroids are probably the ones that control well both inflammation and allergies.
Is it typical to have knee replacements with lupus?
Knee replacements are usually done for osteoarthritis which is a disease that comes with the wear and tear of the joints over the years. So it is unlikely due to lupus itself. A rare situation that this may happen is when steroids for lupus cause osteonecrosis of the bone in the knee. However, this most often happens in the hip joints rather than the knees.
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.