On May 14, Hospital for Special Surgery and the S.L.E. Lupus Foundation hosted a Facebook chat on Lupus and General Health. 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 run a series of our experts’ answers over the next month. For our first installment, rheumatologist Dr. Michael Lockshin answered questions on neurological involvement and pain and flares.
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.
Is memory loss common in lupus patients? I don’t have neurological involvement just lung involvement.
It is fairly common, maybe among 1/3 of patients after 10 or 20 years of illness. The neurological involvement is generally mild (it does not progress to dementia), and we are just beginning to recognize this symptom and explore to whom it happens and why. We cannot predict who will have neurological involvement right now, but we are doing studies to answer these questions.
My husband was diagnosed six years ago and the effects on him neurologically are devastating: brain, muscle weakness to the point of having to go on disability. Is there a chance that it could spread to other organs or remain neurological? Could he have an increased chance of stroke?
Lupus can affect any organ, but usually picks two or three organ systems and doesn’t go any further. So the answer to the question “Is there a chance”? is yes, but the answer to “Is it likely”? is no. What you describe does not increase the chance of stroke, but stroke does occur in patients with lupus for other reasons, such as high cholesterol.
My 42-year-old daughter was diagnosed with lupus about 10 years ago. Lately she has been ‘blacking out’ a lot, and, in the process, has fractured her pelvis and hips. Are these black-outs caused by lupus, or could they be caused by one or more of the many medications she is currently taking?
Blackouts can be caused by heart abnormalities or seizures (due to damage caused by lupus) or from blood pressure or pulse being too low (caused by medications) or for other reasons. Your daughter should talk to her physicians and be reexamined because, as you have already discovered, blackouts can be dangerous and, generally, they can be treated and prevented.
I have dizzy spells where it feels like I’m drunk and it comes and goes. Could this be from lupus or is it something else? I was diagnosed with SLE five years ago, but this has just started this past week.
These spells could be due to lupus or to medication or to something simple like an ear infection. Your treating physician should be able to help sort out the cause.
I get headaches and migraines daily. Could this be a symptom of lupus?
There is a lot of controversy over whether migraines are due to lupus, since migraines are very common. Most doctors now think that migraines are not caused by lupus, but that active lupus makes migraines worse, and that some lupus medications may also worsen migraines.
My neurologist said 100% pain free is not realistic. Is this true? Are dysesthesias common with SLE?
I assume from the way in which the question is asked that the pain you refer to is the dysesthesias (pins and needles and numbness caused by nerve injury). It’s a rare symptom of lupus. When it first occurs it is possible to reverse it, but if dysesthesia has been present for several weeks or months, it likely will not go away completely. Medications are used to make it more tolerable.
Is there any current research regarding CNS lupus and APS, with any breakthroughs regarding new treatment approaches?
There is a lot of research going on with both CNS lupus and APS. You never actually know a breakthrough until it happens and is proven successful, but there many ideas in the air.
Is Ayurvedic medicine or naturopathic helpful with lupus? I was also diagnosed with epilepsy and want to know if there is a correlation with lupus and how it is diagnosed.
In my mind, neither is helpful, but others may disagree. Epilepsy can be a lupus symptom or can be independent of lupus. Generally to make the distinction, it is necessary to get a detailed history and do a thorough neurological examination, including a brain MRI. Sometimes drugs used to treat epilepsy cause a special type of lupus called drug-induced lupus, which is a different issue and is associated with specific blood tests (such as anti-histone antibody).
Flares and Pain Questions
I know there are different types of flare ups. What helps to keep the flare ups under control?
We don’t know exactly how to prevent flare ups, but certainly avoiding sun exposure, if you are sensitive to sun, is one way. Avoiding drug reactions by taking only medications that are absolutely necessary is another. The medication Hydroxychloroquine (Plaquenil) also helps prevent flares.
Is there anything that can really help with the pain? My toes hurt; I can’t bend them, ankles too. Recently my hips are bothering me.
It depends on the cause of the pain. What you describe are not typical symptoms of lupus, but you may have what we call an overlap syndrome with features of rheumatoid arthritis or bone damage from Prednisone or nerve damage. You can be helped, but it is necessary to know why you are having pain. Your physician can help you determine the cause.
Recently I was told I have high anca, which suggests lupus. I am waiting to see a specialist, but what can I do in the meantime? Swelling and flare ups becoming more regular.
Anca is associated with blood vessel inflammation and is common in lupus. A rheumatologist can help sort out the precise cause. If you are having trouble seeing one, call our Physician Referral Service at +1.877.606.1555 or contact the S.L.E. Lupus Foundation to help refer a physician in your area.
I have SLE. What can I do to ease the curving of my wrist and knuckles? Will a wrist brace help?
The first thing to do is to stop inflammation, assuming the curving is due to arthritis associated with lupus. A wrist brace will help if the inflammation cannot be controlled in other ways. Consult with your treating to determine best course of treatment.
Could you be in a constant flare for five+ years?
Yes, unfortunately, but most of the time, more aggressive treatment will bring the disease under control. Sometimes patients do not want to try these treatments because of the side effects. You may be able to work out a medication regimen with your doctor that will control the flare and not cause a lot of side effects. Every patient is different, so it really is a one-on-one doctor-patient discussion to know what is best for you.
Diagnosed first in 1988, remission then again in 1996, remission in 1999. Should I be worried about coming out of remission again? How do I know when a flare up happens? I’ve been in remission now for 14 years. I forget the symptoms of flare ups.
One of the worst things about lupus is it’s unpredictably. However, the longer you have been in remission, the less likely it is to come back. Fourteen years gives you a high likelihood of not seeing it again, and if you did, you would recognize it.
How long does a typical state of remission last?
There is no typical state of remission. I’ve seen people who have one bout, even a series bout, and it never came back in 20-30 years. I’ve seen others with a best remission of only a few months. If a remission lasts five or more years, the chances of it not returning are high. In large populations of lupus patients, flare ups occur a little more frequently than once a year.
Michael D. Lockshin, M.D., is Director of the Barbara Volcker Center for Women and Rheumatic Disease at Hospital for Special Surgery. He is the author of nearly 300 research papers, book chapters, and books, most on the topic of lupus, pregnancy, antiphospholipid syndrome and sex differences in disease.