Lupus and Skin Involvement, Lupus and the Brain: Your Questions Answered

by HSS on the Move
7.7 blog

In May, Hospital for Special Surgery, Molly’s Fund Fighting for Lupus and Lupus Foundation of America hosted a Facebook Chat on Lupus and General Health. We categorized the questions, and will run a series on our experts’ answers over the next month. For our third installment, Dr. Henry Lee, Dermatologist, Dr. Kyriakos Kirou, Rheumatologist, and My-Lan Tran, Social Worker and answer questions on Lupus and Skin involvement and Lupus and the brain.

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, Lupus Foundation of America, or Molly’s Fund Fighting Lupus. 

Q1: I have no insurance, but I’m sure I have lupus. It started when I was fifteen with terrible skin flare ups. I’m forty now and can’t be in the sun, make a fist, or walk real well some days. I can’t digest food well. My vision is bad and I see double. Sometimes my fingers turn blue when I get cold. Where do I even start finding someone that would help? I just feel like there is no hope for me.

Dr. Henry Lee: Our apologies for not getting this answer out to you sooner.  I am sorry to hear about the symptoms you are experiencing. Some of the symptoms (i.e., not being able to make a fist or walking well) are best addressed by a rheumatologist. I am a dermatologist and so I will comment more on the skin symptoms. Your fingers turning colors in the cold is known as Raynauds, and can be seen alone or may be related to an underlying condition like lupus.  It is very difficult to comment on “terrible skin flare ups,” without actually seeing the flare up. So, unfortunately, I am not going to be of much help for that issue. I agree with you that you should seek help given the constellation of symptoms that you are experiencing. I would start with seeing a rheumatologist.

Dr. Kyriakos Kirou: It appears that you have photosensitivity, Raynaud phenomenon, and possible arthritis in your hands. I am not sure about your eye or stomach symptoms. In order to establish or rule out a lupus diagnosis, you need to see a rheumatologist.

My-Lan Tran: I’m so pleased that you are reaching out and making your voice heard. Your perseverance will help you through in finding the help you need. That said, connecting with a primary care doctor would be a good start, and together with a rheumatologist to better determine your health condition. For immediate care, while dealing with the insurance for healthcare needs, look into the local community health centers. These Centers may even have certified health insurance “navigators” who can help you with your insurance application. Social workers at the outpatient clinics within many hospitals can be a resource for you too.  Meanwhile, to apply for insurance coverage online (or for information), look into the Federal government, www.healthcare.gov, and/or the Insurance Exchange Market in the State you live in. You may also find a list of certified health insurance sites where the “navigators” can help you through the application process in-person.  Hope this may be of a help.

Q2: I’m having problems with severe hot flashes. They seem to be triggering flares. None of my doctors have any ideas.

Dr. Henry Lee: Hot flashes can be related to a number of conditions and we, unfortunately, would need much more information about you and the hot flashes to help you properly address this.

Q3: Have you got any suggestions for UV sensitivity that reacts to the slightest contact? I’ve been living in the dark, and my regular rheumatologist has referred me to another who specializes in lupus.

Dr. Henry Lee: Photosensitivity can be a very difficult. There are several things that can be done to help you. Some investigative work can be done to figure out why you are so photosensitive. It very well may be secondary to lupus but there are a number of other conditions that can lead to photosensitivity and even medications can lead to photosensitivity. Photo testing can be performed by an appropriate dermatologist to find out what range of UV light you are sensitive to. Finally, there are a number of strategies to photo-protect your skin, i.e., UV protective clothing/hats, appropriate sunscreens (at least SPF 30 and should also broad-spectrum) applied in a thick amount and reapplied every 2 hours if out in the sun, avoidance of the sun at peak hours of the day and finally, I have used oral medications (i.e., plaquenil) and had some success in tempering the photosensitivity. I hope this helps.

Q4: I had lupus neuropathy for 9 years and have a lot of joint pain. I took plaquenil, mmf, corticosteroid, and more. My question is with so many medicines, will the pain and fatigue go away?

Dr. Kyriakos Kirou: You may want to ask your doctors for gabapentin (Neurontin) or pregabalin (Lyrica) for your neuropathy-related pains. These medications may also work for fibromyalgia-related pains (if you were given this diagnosis as well).

Q5: Do you have any good information about antineuronal antibodies?

Dr. Kyriakos Kirou: Anti-neuronal antibodies are probably tested in research settings rather than in regular clinical care. The test is not very helpful otherwise.

Dr. Kyriakos Kirou  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. Henry Lee serves as a attending dermatologist at Hospital for Special Surgery. He has a broad interest in medical dermatology, but pursues a particular interest in autoimmune cutaneous disorders and collagen vascular disorders.

My-Lan Tran, Social Worker, is the manager of LANtern (Lupus Asian Network) at Hospital for Special Surgery.

Topics: Ask the Expert, Featured, Lupus, Neurology, Rheumatology, Social Work
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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.

Comments

sandy says:

Have been treated for SubAcute cutaneous lupus for 10 years…went off my blood pressure medication and here it is July and have had no rash. Is the dx possible incorrect?

HSS on the Move says:

Hi Sandy, thanks for reaching out! Dr. Henry Lee, Dermatologist, says: “Although rarer, there are cases of drug induced subacute cutaneous lupus. It is definitely worth exploring with your dermatologist and rheumatologist if the blood pressure medication could be a possible culprit.” If you wish to receive care at HSS, please contact our Physician Referral Service at 877-606-1555 for further assistance.

Sanetra Felix says:

I have been diagnosed with Lupus in 2012 & the doctor tells me I am unable to take the Lupus meds do to my blood work that comes back. Am I the only one who can”t take the meds?

HSS on the Move says:

Hi Sanetra, thank you for reaching out. Dr. Michael Lockshin, Rheumatologist, says: “There are many blood tests that can be abnormal (or normal) in lupus, and some of them could make it dangerous to take one or two of the available medications, but in such cases, there are many alternatives. Perhaps you are thinking about belimumab (Benlysta), which has gotten a lot of publicity in the past couple of years. The original studies were done only on people who had high titer anti-DNA antibody (about 80% of lupus patients), and, since the medication is very expensive, many insurance companies will not pay for someone who does not have anti-DNA antibody. If that is the case, it is your insurer who is saying no. Depending on the circumstances, we have sometimes been able to appeal this kind of decision to get the medication for the patient, but appeals do not always work.” It is best for you to consult with your treating physician. If you wish to receive care at HSS, please contact our Physician Referral Service at 877-606-1555 for further assistance.

wendy mingins says:

thank you for the questions that you have let me read it does help

Michelle says:

I wanted to share an experience similar to the first questioner. I also can”t make a fist, but this is not due to arthritis – it”s because my skin is too tight around my hands. My symptoms are a mix of systemic sclerosis (scleroderma), with skin tightness, and lupus. I wonder if you may be experiencing the same thing.

I have experienced similar issues with digestion and I have found that digesting food is easier for me when I avoid most added fats, getting most fats from nuts and seeds. I don”t use oil anymore in my cooking (google “water saute”). I”ve also been avoiding milk and meats and eating much more vegetables. I have felt a difference.

I hope you can find a way to get insurance coverage. Please do not give up hope.

Linda DeCarlo says:

My son has lupus nephritis.He is under the care of a nephrologist and rheumotologist. He has stomach bloating and no one can figure out why.also, what should a yearly visit to a rheum. entail. He just went and didnt get a prescription for a blood test to check other organs etc. What is the protocol?

HSS on the Move says:

Hi Linda, thank you for reaching out. Dr. Kyriakos Kirou, Rheumatologist, says: “Stomach bloating could be due to lupus nephritis when the disease is active. In that case, excess fluid may accumulate in the area, the same way it does in the feet (edema). However, bloating could be due to other problems not directly related to lupus, such as various GI-related issues. A rheumatologist may order tests according to their clinical judgment. For example, a patient that has active disease will need blood tests more often than someone else without active lupus, in order to make sure that the kidney function does not get worse, or there is no worse anemia. Also, patients on immunosuppressive drugs such as cyclophosphamide, azathioprine, etc. will need blood tests periodically in order to be sure that there are no side effects to their white blood cell counts, liver enzymes, etc.” If you wish to receive care at HSS, please contact our Physician Referral Service at 877-606-1555 for further assistance.

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