Lupus and the Brain, Lupus and Pain: Questions Answered

Anatomy of the brain

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.

Neurological Questions

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. Visit our website for more information.

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.

Topics: Rheumatology
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.


  1. I am 56 and have lupus. I have had 2 hip surgeries due to congenital displasia that I was born with then 3 years ago my left knee dislocated found out my knee caps are too high ; called patella alta. Dr lowered one knee cap and I have sheen a mess ever since. My body is in constant pain as I fell like I am on the bias. Torn my meniscus in right knee and right hip MRI shows CAM impingement, torn labrum, cycst and other ligament tears. Last week diagnosed with cataracts, left eye is swelling and feels like pressure is building. Being sent to Neuo Opthalmologist very soon. Failed eye chart test. Thyroid blood test came back low. On thyroid drug now, no change after week and a half. I am in constant pain. Don’t sleep well. Up and down. Nerve in mouth sore for 3 years. They did 2 root canals. Did noy help so I wear a mouth guard which seems to settle it a bit. I have tried gabapentin, lyrica, butrans 5 patch mainly for nerve pain in shins. Could not function mentally. Felt like a zombie. Mother died a horrible death from Alzheimer’s at Xmas. Too tired and in too much pain for service so just had her cremated and brought her home to sit on the piano in the sunroom. I take plaquinil, just stopped leflunomide because of cataract surgery, meloxicam, pain meds and cyclobenzaprine for hip spasms. I need someone to look at my entire package. I waited 2 years for knee surgery. Another year for hip guy who said I should have a replacement but the problem seems to stem from the botched knee surgery; patella tendon transfer. I need help. Pain meds not holding. Was told last week thyroid too low, on meds now. Getting late. I can’t read anymore with my eyes. Why is my left eye swelling with so much pressure behind it!? Why can’t they stop the pain from lupus. I was working full time until the knee surgery. Where could I go to get everything looked at. Drs just want to look at one piece of the puzzle or they ship you off to another Dr with a huge wait list. Please help. I am at the end of my rope.

    1. Hi Trish, thank you for reaching out. Dr. Michael Lockshin, Rheumatologist, says: “What you describe in the hips and knees is not related to lupus, nor are the cataracts (unless you have been on corticosteroid drugs for a long time). Lupus can cause swelling behind the eye, but this is rare, and there are many other causes that should be considered. While many people with lupus have problems with the thyroid gland, we consider that to be a separate problem. At our hospital we do have the capacity to look at both the lupus issues and the orthopedic issues together.” If you wish to seek consultation at HSS, please contact our Physician Referral Service at 877-606-1555 for further assistance.

    1. Hi Tracy, thank you for reaching out. Dr. Michael Lockshin, Rheumatologist, says: “Both lupus and Behcets are autoimmune diseases, cause blood vessel inflammation (vasculitis) and mouth sores. Behcets causes genital sores more than lupus does, and more eye and brain disease; lupus causes more rashes and kidney disease. Lupus has positive blood tests, whereas Behcets does not. Behcets, for reasons unknown, mostly affects people from the Mediterranean, Middle East, and Japan, without sexpreference, whereas lupus affects mostly young women, non-whites more than whites. It is possible, early on at least, to confuse the two diseases, but eventually they appear different, and are treated somewhat differently.”

  2. I have not yet seen a doc. to check if I have lupus. I do have RA. and now within the past 6 months, I have developed a butterfly type rash on my face. (very embarrassing). I also have heart issues. I was diag. several yrs ago with Mitro valve Prolaspe. Could you give me some major symp. of lupus before I seek a doc. I also have intermittent muscle and joint pain, Thank you.

    1. Hi Jacki, thank you for reaching out with your question. Dr. Michael Lockshin, Rheumatologist, says: “Oh, that is hard. There are many symptoms of lupus and it takes some skill at interpreting to be sure, especially if you also have rheumatoid arthritis. Also, there are many reasons to have a butterfly rash other than lupus. There are many websites that give more information – we have a website as which is a good place to start: If you are interested in receiving care at HSS, please call our Physician Referral Service at 877-606-1555.

  3. I have had lupus since I was a young, I am now 54, and the systematic and discoid Lupus has taken a toll on my body, I live in pain daily, no one really understands. It has effected my fingers, all my joints, my memory, my pain never stops and the medicine I take does no good, my legs still kick, I even tried to take 2 pills last night, but even that did not help the pins and needles and my legs kicking, I have not got a good nights sleep in over 20 yrs.

  4. I was diagnosed with SLE lupus about 3 years ago. Seems I’ve had it for over 20 but no one ever checked for it. I also have fibromyalgia. It is so hard to get family and friends to understand what I am feeling. They act like I am making it up or lazy or it’s all in my head. The first Med they gave me started shutting down my liver within a week. Now I am on the plaquenil. Guess its slowing the lupus down I can’t really tell what’s lupus and what’s the fibro. What is the outcome from going so long without treatment? And how do you get others to better understand the pain and things I feel?

If you’d like to consider HSS for treatment, please contact our Patient Referral Service at 888-720-1982. For general questions and comments, reach us on Facebook or Twitter.