Your Lupus Questions Answered, Part I

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Recently, Hospital for Special Surgery and SLE 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 will run a series on our experts answers. For our first installment, rheumatologist, Dr. Michael Lockshin, answers questions on medication and treatment.

The information provided is for informational and educational purposes, and does not 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 SLE Lupus Foundation.

Q1. Is it common for Sjogren’s to present itself as the primary issue in patients who typically have SLE as the primary disease? I was misdiagnosed with 3 different things, one of the chronic candida before they realized what it was. I was seriously malnourished from not being able to eat.

One of the things that doctors do not speak about very much is the overlap of several autoimmune diseases in the same patient. It is a problem that we are studying right now and hope to help other doctors understand. If the patient has one diagnosis, such as lupus, consider the possibility that a second, such as Sjogren’s, is also present.

Q2. I have been on a home health nurse for IV medications and also hospitalized 2 times since surgery due to not responding to any antibiotics being used. Is this common for SLE?

It is hard to tell without knowing the specifics. Infections in some parts of the body, for instance bones, are very hard to get rid of. Some types of infecting germs do not respond to antibiotics. People on high doses of immunosuppressive drugs cannot fight infection well. Any or all of these things may explain your problem. I would not call it common, but we certainly do see such problems in SLE patients.

Q3. If a patient has a positive ANA along with numerous symptoms and is diagnosed with SLE, but then later has a negative ANA, does this mean it is not lupus even though they are still experiencing lupus symptoms?

First, there are several ways to do an ANA test, and some are more prone to be falsely negative than are others. Second, the symptoms may be due to treatment of lupus rather than to the disease itself. To determine whether symptoms are due to lupus, it is necessary to put all of the available information together, not just the ANA.

Q4. As a 47 year old woman living with lupus for over 32 years, what are the questions I should be asking? The tests I should be taking? The signs and symptoms to notice?

Lupus causes many symptoms, so it is hard to give specific advice to any one person. Things that are common after many years are osteoporosis, particularly if you have taken steroids for any length of time. You can test osteoporosis with a bone density test. You will also want to know that your blood pressure is normal and that your urinalysis is normal. Most other things will cause symptoms.

Q5. How effective is low dose chemo in treating a flare?

There are several ways of answering this question. There is a lot of interest these days in using several chemo drugs simultaneously, each low dose, rather than one at a time in high dose. In England, rheumatologists use cyclophosphamide (Cytoxan) in smaller doses more frequently than we do in the United States, and it seems to work just as well either way.

Q6. I have lupus and my daughter has Hashimoto hypothyroid since the age of 9. At first, they thought it was lupus. Is there a chance she will develop lupus with her also having Arnold chiari malformation and scoliosis? When is there a proper time I should check for lupus?

Hashimoto thyroiditis is very common not only in lupus patients, but in families of lupus patients. By itself, it does not increase your daughter’s chance of developing lupus, which is about 1%. There is no point in testing her because most patients with Hashimoto have positive antinuclear antibodies. I would test her only if she develops symptoms. The chiari malformation and scoliosis are unfortunate, but are unrelated to either Hashimoto or lupus.

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.

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.

18 Comments

  1. I was told that I tested positive for the Lupus Antibody. What does this mean? He told me that I didn’t have Lupus. Just that my immune system is making antibodies to fight this, does this sound right? I already have Antiphospholipid Syndrome, Protein S Deficiency, Epilepsy, and Hypoglycemia (low blood sugar). Am I at a higher risk of developing Lupus?

    1. Hi LeRoy, thank you for reaching out. Dr. Michael Lockshin, Rheumatologist, says: “Another term for Antiphospholipid Syndrome (APS) is ‘Lupus Anticoagulant Syndrome’ because it was first found in lupus patients, so that may be what your doctor meant. Or it may be that you have an antinuclear antibody, which is a screening test for lupus, but is positive in 30-50% of APS patients and does not have further meaning. Or it could be that you have an antibody that is specific for lupus, like Anti-DNA or Anti-SMITH. This, too, is positive in 10-30% of APS patients who do not have lupus, but they need to be watched a bit more closely. If that is what you have, the risk of developing lupus is low, but it is higher than if those tests are negative.” It would be best for you to consult with your treating physician to determine the best course of treatment. If you wish to receive care at HSS, please contact our Physician Referral Service at 877-606-1555 for further assistance.

  2. I was just wondering can you have the Arnold chiari malformation 1 and lupus at the same time even though they are not related??

    1. Hi Donna-Rae, thank you for reaching out. Dr. Michael Lockshin, Rheumatologist, says: “The Arnold-Chiari malformation (in which the cerebellum slides through the hole in the bottom of the skull) is something you were born with and is not a terribly rare finding. I don’t know of any way in which it is related to lupus, except sometimes it causes symptoms that suggest neurological lupus.”

    1. Hi Yvonne, thank you for reaching out. Dr. Michael Lockshin, Rheumatologist, says: “Generally, you want to know what organs are involved and how seriously. You will also want to know the expected benefits and the expected side effects of the medicines prescribed, and alternatives if you are uncomfortable with the answers. If your case is particularly difficult, will a second opinion be useful- any doctor should be willing to accede to that.” If you wish to receive care at HSS, please contact our Physician Referral Service at 877-606-1555 for further assistance.

  3. Do you know if lipomas can be related to lupus and sjogren’s. I started off with a small swelling on one side of my neck but it ha started to get larger and one has now started to appear on the other side of my neck.

    1. Hi Lesley, thank you for reaching out. Dr. Michael Lockshin, Rheumatologist, says: “First, do you know that it is a lipoma? The salivary glands (mumps glands) often swell in Sjogren’s, and appear on the sides of the neck, so I would double-check on what they are. Lymph nodes also appear there. An MRI or ultrasound will distinguish among these. Otherwise, lipomas are not related to lupus or Sjogren’s.” It would be best for you to seen an in person consultation with a treating physician so that they can determine the best course of treatment. If you wish to receive care at HSS, please contact our Physician Referral Service at 877-606-1555 for further assistance.

  4. Please address the confusion issue with lupus (SLE). It started about 6 months before I was diagnosed, and it has been very very difficult to function.

    1. Hi Robin, thank you for reaching out. Dr. Michael Lockshin, Rheumatologist, says: “This is a big problem in lupus, and one we don’t fully understand. It merits an evaluation, usually with an MRI and a neuropsychological assessment- mostly to exclude other possible causes. If nothing else is found, sometimes drugs like modafinil or Provigil help.” It would be best for you to consult with your treating physician to determine the best course of treatment. If you wish to receive care at HSS, please contact our Physician Referral Service at 877-606-1555 for further assistance.

  5. I have Lupus I am currently taking cellcept,, along with Plaquenil. What are your experiences or your patient responses with the above medications?

    1. Hello, thank you for reaching out. Dr. Michael Lockshin, Rheumatologist, says: “These drugs are commonly used, fairly easy to take, and are effective. They don’t work in everybody. So, if there are no improvements after 3-6 months, it may be time to try something else. Otherwise, they are first choices for most patients.” It is best to seek further consultation 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.

    1. Hola Nancy, gracias por llegar. Dr. Michael Lockshin, reumat?logo, dice: “El lupus es muy diferente de un paciente a otro, y muchos tienen un episodio de una sola vez y luego est?n bien para el resto de sus vidas. Otros tienen que permanecer en tratamiento. Por lo general, si usted es 20, el tratamiento con corticosteroides (prednisona) es muy desagradable debido al aumento de peso, cambios en el aspecto, y cambios de humor, pero eso es para un (relativamente) poco tiempo. Hay otros medicamentos que no causan los efectos secundarios. Los pacientes pueden terminar la escuela, tener empleo, casarse, tener hijos. Los detalles dependen mucho de c?mo el lupus le afecta. Usted puede hablar de estas cosas con su m?dico. Tambi?n, tenemos grupos de chat para j?venes con lupus, en persona o por medios de comunicaci?n social, y las organizaciones de voluntarios lupus hacemos as?. Los grupos de chat incluso incluyen los de grupos ?tnicos espec?ficos. Podr?a ayudarle a tomar contacto con uno. Usted no est? solo.”

  6. Dear Dr. Michael
    My wife is 36 years old has lupus since two years and taken her to India to ensure that she has the lupus ,
    They have make medical tests and come to results of lupus patient they have given us treatment and every two months we make test and send the reports to give us the prescription . But the some feeling of pain and weakness
    Can you advise us if there is new treatment available in area ?

    1. Hi Saber, thank you for reaching out. Dr. Michael Lockshin, Rheumatologist, says: “I’m not sure if by ‘area’ you mean the geographic area or the medical area of lupus. The answer is yes to both of your questions.

  7. I think these questions are not relevant for everybody having Lupus. The future is what counts!
    I know, not all people are the same, but in my case Lupus is resting now I’ve had the menopause.
    I almost died because of a kidney inflammation, had 13 chemo’s, years of taking prednison and Cellcept and other medicaments. Because of the chemo I got my menopause and it was going upwards. My kidneys are 100% again, I don’t have sunspots anymore and I’m feeling great!
    So, there is hope! That’s what I want everybody to know.

    1. Hi Yvonne, thank you for sharing your story and offering words of encouragement to our audience. We are glad to hear that you are doing well!

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