Hospital for Special Surgery and the S.L.E. Lupus Foundation hosted a Facebook chat on Lupus and General Health. Participants asked many questions, but our room full of experts could only answer as much as they could 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 fifth and final installment, Rheumatologists Dr. Kyriakos Kirou, Dr. Jane Salmon, Dr. Michael Lockshin, and Dr. Alana Levine, Dermatologist Dr. Joanna Harp, Nurse Practitioner Monica Richey, and Social Worker Erica Sandoval answered questions on the effects of lupus on the body as well as general questions often asked when it comes to lupus. Read the others in this series: medication, joint pain, pregnancy, and testing.
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.
Q1. Can you shed some light on autonomic nervous system issues in relation to lupus? Such as blood pressure issues? I haven’t been able to find any answers.
Dr. Kyriakos Kirou: On rare occasions, SLE will be associated with orthostatic hypotension. This means that the blood pressure will drop when one stands up from supine or sitting position. This is due to a problem of the autonomic system and inability to make the proper adaptations in blood vessel tone or heart rate/contractility that is required to maintain a stable blood pressure in all body positions. If this problem occurs in the context of flare of lupus, it may respond to treatment. More frequently, orthostatic hypotension will be due to dehydration, for example after diarrhea, or too strong blood pressure medications.
Q2. Is brain fog common in Lupus or should I be worrying about a more serious problem?
Dr. Kyriakos Kirou: Yes, brain fog is common in SLE and usually does not get very severe. Of course, it is always a good idea to talk to your doctor and make sure there is not another condition causing the problem.
Q3. When I am in a flare up and in pain, why do I lose control as far as anxiety, crying fits, suicidal thoughts, and feeling angry and mean (just a whole different personality). I am in pain 24/7 and steroids make me very moody. Could the lupus be affecting my brain? No meds have helped and I am currently on CellCept.
Dr. Jane Salmon: Your emotional liability can be caused by severe pain and by steroids. Lupus itself can affect thinking, mood and behavior. You should see your physician to discuss your anxiety and personality changes and consider a referral and evaluation by a psychiatrist. If you are having suicidal thoughts, it is important to get help right away by going to your nearest emergency room.
Q4. The neurological symptoms and memory loss of my husband is significant. It almost mimics MS and it seems to be getting worse. It is difficult for his doctor to change any course of action even though he has never been free of lupus symptoms and has been on the same medicine for almost 5 years. Do the neurological issues continue to deteriorate?
Monica Richey: I am not sure what neurological symptoms you are referring to. If you are talking about memory fog, these symptoms usually do not follow the same path as lupus; you can have no symptoms and still have cognitive dysfunction. The best option is to see a neuropsychologist and have a comprehensive memory test. If the memory is a problem, they will be able to pinpoint what is happening. Also, have the B12, B1, B6, and folate levels checked. Sometimes they are now low due to long term use of PPI’s (Nexium, omeprazole) and can also mimic memory loss and cause peripheral neuropathy.
Q5. How about vertigo and uncontrollable hand shaking? I tested negative for Parkinson’s and other possible causes. Are these episodes a result of lupus?
Monica Richey: Vertigo can be a diagnosis on its own, you will need to see an ENT and have a specific vertigo exam because sometimes, it is not related to lupus at all. Also, the hand shaking can be side effects of certain medications. It is hard to say if it’s related to your lupus. It is better to talk to your neurologist regarding other causes of these symptoms. It is easy to blame everything on lupus, but sometimes, they are completely unrelated.
Q6. How common is it to develop Peripheral Neuropathy and Trigeminal Neuralgia due to nerve demyleniation, due to lupus activity?
Dr. Michael Lockshin: There are three questions here: (1) How common is it to develop peripheral neuropathy due to lupus? It’s neither rare nor common, but it does happen. It can be quite distressing and is generally treatable, though recovery may take a very long time and may not occur at all. The outcome depends on the severity and the duration before treatment begins.
(2) How common is it to develop trigeminal neuralgia due to lupus? This is quite rare, but it does happen. More likely causes are Sjogren’s syndrome, scleroderma, and Lyme disease. Also, trigeminal neuralgia can occur without any evidence of a rheumatic disease.
(3) Due to nerve demyelination due to lupus? Determining that the problem is demyelination is difficult, and most often it is not specifically demyelination but rather insufficient blood supply to the nerves due to lupus-caused blood vessel inflammation (vasculitis). The distinction is a very technical one, but the treatment implications are different for one cause versus another. Blood vessel inflammation is treated as active lupus inflammation; demyelination without blood vessel inflammation might be treated with high doses of vitamins and drugs like gabapentin.
Q7. My cheeks are always pink, but rash-like. It’s worse at times than others. Could this be the butterfly rash?
Dr. Joanna Harp: This could be the butterfly rash as it can just be red, not necessarily rash-like or flaky. Sun protection is very important, but if it persists, becomes itchy, or otherwise asymptomatic, it may be worth seeing a dermatologist to see if any additional treatments can be used.
Q8. Does anyone else experience extreme pain when touched during a flare? It’s so bad that my skin feels like it is being cut.
Dr. Joanna Harp: Skin is a frequently involved organ system in lupus. There may be topical therapies that can be used to decrease your skin pain during a flare, so it could be worth evaluation by a dermatologist.
Q9. I lost my insurance in 2008 and have not seen a doctor since then, but it seems that I have more and more issues with my SLE. Any time that pressure is put upon my skin, I get a huge welt. In the evening, if I lay back against the back of my tub, I get a welt on the entire width of my back. Is there something that I need to worry about? What causes it?
Dr. Joanna Harp: This sounds like it could be pressure induced urticaria, or hives. This can be linked to your SLE, but it could also be unrelated. It is worth seeing a dermatologist to confirm the diagnosis and see if any treatment is required. Make sure you bring pictures with you if your rash is not always present.
Q10. I have Lupus, osteoporosis, vasculitis, Raynaud’s, eczema, psoriasis, and fibromyalgia. My psoriasis is getting so bad and I am getting large patches popping up everywhere. I fear that it is going to take over my body soon. I am currently on Cellcept 100mg 2x/day. I can’t take Plaquenil because I get massive hives when I take these together. I can’t take Prednisone per Dr. Robert Buly (I had Avascular necrosis in both knees and he performed core decompressions on them). He told me if I ever take Prednisone again, my knees will be shot. Do you have any suggestions?
Dr. Kyriakos Kirou: You may need a dermatology consultation and possibly a skin biopsy to help decide if your skin lesions are due to psoriasis vs. skin lupus. If it is psoriasis, some options include topical agents (such as steroid creams/ointments, pimecrolimus creams, vitamin D creams, etc.), light therapy, methotrexate, cyclosporine, anti-TNF medications (such as etanercept (Enbrel), dalimumab (humira), etc.). However, if your skin lesions are due to lupus, light therapy can make them worse. Please discuss all your treatment options with your rheumatology and dermatology doctors.
Q11. I have a recurring bladder infection going on one year. My doctors are baffled and believe it’s a link to my lupus. What are your thoughts or suggestions?
Monica Richey: Lupus per se will not cause infections and is sometimes related to other things. It is good if you can see a neurologist to have a full work up. Also, you can get more infections if you are on immunosuppressant medications such as Azathioprine and Mycophenalate.
Q12. I had a kidney transplant about 10 weeks ago, and ever since, I’ve had orthostatic hypotension. Dystolic drops about 20 points and my pulse goes up about 20 or so points. Could this be POTS? I read that anesthesia and just surgery in general can bring it on. I only started experiencing this about 3-4 weeks ago. My nephrologists have no idea why this is happening. Is it common with lupus in general?
Dr. Michael Lockshin: Although anyone can develop POTS (Postural Orthostatic Tachycardia Syndrome), I do not know of a way POTS would be linked to either lupus or kidney transplantation. Two things do come to mind: If you are producing a very large amount of urine, which sometimes happens after a transplant, the fluid in your body may do too little. The kidney doctors should be able to figure this out. Another thing that can happen is that the adrenal glands are not functioning normally, which sometimes happens in lupus. Again, this can be figured out with appropriate blood tests. Either way, this is not common with lupus or with kidney transplants in lupus patients, so far as I know. There are ways of figuring out what is happening.
Q13. I have had lupus for 10 years and rheumatoid arthritis for 18 years. Now I am dealing with parotid gland swelling. Is this associated with my lupus or rheumatoid arthritis?
Dr. Kyriakos Kirou: Sometimes parotid swelling is associated with Sjogren’s syndrome, a related disease. You may need an imaging study such as an MRI. Please consult with your rheumatologist and/or ENT specialist.
Q14. I have Scleroderma, Lupus, Raynaud’s, and Fibromyalgia. My index finger on my right hand is turning black on the tip. What is this and is my finger going to fall off?
Dr. Jane Salmon: In patients with Raynaud’s, there is a spasm of blood vessels leading to decreased blood flow in digits. If a fingertip remains white or dusky, seek medical attention. Blackness at the tip might mean that the tip of the finger is at risk.
Q15. I was always curious about whether lupus is some sort of parasitic infection. Have parasites been completely ruled out in lupus?
Dr. Michael Lockshin: Doctors have been concerned for quite some time that lupus is triggered by infection, but no infection has been found, including parasites. Furthermore, in parts of the world in which parasites are very common, lupus is not. While one cannot completely rule out a cause- that is, one cannot prove a negative- based on what we know today it is very unlikely that parasites are related to or a cause of lupus.
Q16. Does lupus and endometriosis have a link?
Dr. Alana Levine: I am not aware of a link between endometriosis and lupus. I found two recent publications on this topic, neither of which found an association between these two diseases.
Q17. I got diagnosed with Lupus in August 1987. I have lived with the disease for 26 years, kidney involvement twice and seizure once. I recently had a primary doctor for many years and every time I went to see her, she told me that my blood work looked normal and I no longer had lupus. Sometimes I felt that she never even believed that I was diagnosed with lupus. What do you say to people that make that kind of comment and they are a doctor?
Dr. Alana Levine: While there is currently no cure for lupus, it is possible for patients to enter long periods of remission. If your current doctor didn’t know you while you were very sick from lupus, it might be difficult for her to really grasp what you experienced. You might consider spending some time explaining the details of your illness to her so she has a clearer picture of your history.
Q18. I’m a patient of SLE for the last 8 years and want to consult with rheumatologists in your country. How can I do that?
Dr. Alana Levine: Hospital for Special Surgery’s International Center can help patients outside the US arrange for consultations at our hospital. You may also want to consider contacting the SLE Lupus Foundation. Here is a helpful link to HSS’ International Center: https://hss.edu/international-center.asp.
Q19. What steps is the medical community taking to better improve the communication and understanding of lupus/potential lupus patients?
Dr. Jane Salmon: Our Lupus Chats directly address this need. The American College of Rheumatology’s Lupus Initiative (https://thelupusinitiative.org) is directed at physicians, and NIAMS and HSS have websites with important patient information.
Q20. Is there a good rheumatologist in Syracuse, New York that would listen?
Dr. Jane Salmon: You can call the local Arthritis Foundation, Lupus Alliance of Upstate NY, or American College of Rheumatology.
Q21. I have been diagnosed with Lupus. Unfortunately, because of divorce and lack of health coverage, I keep getting new doctors that try to misdiagnose me. I have major seizures, fibromyalgia psoriatic arthritis, gout, Lyme disease, SVT, type-1 diabetes, and calcified kidneys. I also suffer from migraines, blindness, the butterfly rash on my face, and eczema all over my arms. I have had 3 positive ANA tests, a hysterectomy because of tumors and severe anemia, and my gall bladder and appendix are gone as well. Now I have a lump in my breast. I look healthy. All I can manage to get from any doctor is Keppra and Cymbalta. A lot of people think I’m lazy, but I live everyday with severe pain and fatigue. Is there a program that can help? I keep losing my jobs because I can barely function. Social workers are at their wits end with me.
Erica Sandoval: I am sorry to hear you are going through such a tough time. I can’t imagine how difficult it is to navigate the health system and living with a chronic illness. A lack of health coverage can be extremely challenging when navigating all of your medical needs. As you mentioned, you looking healthy and not feeling well can create negative stigma such as being called lazy. Lupus is an invisible disability, but with great doctors, mental health providers, supportive friends and family, one can cope better with all these challenges.
Hospital for Special Surgery’s Lupus Line Program is a national telephone peer counseling program, staffed by trained volunteers who are lupus veterans or family members. Callers are screened and matched by a Program Manager for the convenience of those wanting one-on-one peer support by telephone from home. I have included the link so you can access this program at your convenience. I encourage you to call and get connected. I wish you all the best.
Q22. Is there a dietary formula to follow for people with Lupus?
Dr. Michael Lockshin: Unfortunately, we don’t know of any diet that is specifically helpful for people with lupus. It doesn’t hurt for an individual patient to experiment with a diet, but I have not seen any patient improve by eliminating one thing or another from their diets.
Q23. I’ve been having a flare up for a while and I can’t get a doctor’s appointment. Should I go to the ER?
Monica Richey: I understand that sometimes, physician’s schedules are busy, but you should never ignore or delay care during a lupus flare. If your physician cannot see you, you should go to the ER for sure.
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. He has a special interest in the research and treatment of systemic autoimmune rheumatic diseases, such as systemic lupus erythematosus.
Dr. Jane Salmon is Co-Director of the Mary Kirkland Center for Lupus Research, Director of the SLE APS Center of Excellence, Director of the FOCIS Center of Excellence, and Director of the Lupus Registry and Repository. Dr. Salmon’s research has focused on elucidating mechanisms of tissue injury in lupus and other autoimmune diseases. Her basic and clinical studies have expanded our understanding of pregnancy loss and organ damage in SLE and the determinants of disease outcome in lupus patients with nephritis, pregnancy, and cardiovascular disease.
Dr. Michael D. Lockshin, 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.
Dr. Joanna Harp serves as an attending dermatologist at Hospital for Special Surgery. She specializes in complex medical dermatology and skin disorders related to internal disease.
Monica Richey, MSN, ANP-BC/GNP, serves as the nurse coordinator for both the Mary Kirkland Center for Lupus Care and the Cardiovascular Disease Prevention Program. Ms. Richey’s professional interests include cardiovascular disease in systemic autoimmune diseases and patient education.
Erica Sandoval is the program coordinator for Charla de Lupus at Hospital for Special Surgery, which is a national peer health education program staffed by trained volunteers who are lupus veterans, with an emphasis on reaching Spanish-speaking communities.