Lupus and Co-Occurring Conditions: Your Questions Answered

by HSS on the Move
6.23 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 second installment, Rheumatologists Dr. Alana Levine and Dr. Jane Salmon answer questions on Lupus and Co-Occurring conditions.

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: Are you aware of other treatments that are successful in treating avascular necrosis of the knee other than replacements?

Jane Salmon: Unfortunately, when arthritis from AVN results in intractable pain and impaired quality of life, and there isn’t a response from anti-inflammatory medicines and joint injections, the surgical approach is all we have.

Q2: I was recently diagnosed by my private doc with lupus, who sent me to a rheumatologist who will not confirm until they do many blood tests, and I’m currently waiting on the results. I also have fibromyalgia with chronic joint pain and fatigue. Can you give me any advice on what to ask the rheumatologist? Should I mention I am on Cymbalta for fibromyalgia? I do know that my positive ANA test has a speckled pattern.

Jane Salmon: Lupus is diagnosed by medical history, physical examination and laboratory tests. These elements of data are looked at in the aggregate. It is valuable to read about lupus before your visit. Also, lupus patients may have fibromyalgia symptoms, and that should be included in your conversation.

Q3: As a nurse, will my lupus and Sjogrens get worse if I work nights?

Alana Levine: People who work nights may be at greater risk for exhaustion if they attempt to keep a somewhat normal “day” schedule in addition to working night shifts.  Getting enough rest is critical to keeping yourself well.  If you do work night shifts, it is important to get enough rest during the day to prevent yourself from becoming too worn down.

Q4: I have lupus and Sjogrens. Do transfusions work for remission?

Alana Levine: Some patients with lupus may develop low blood cell counts, including anemia and low platelets. In certain circumstances, transfusions of red blood cells and/or platelets may be effective in replenishing blood cell counts, although they do not treat lupus directly. Other medications, such as steroids, will likely be needed.

Q5: I seem to have a lot of the symptoms/health related issues associated with Lupus. However, every doctor I go to says my labs don’t show anything. I’m unable to work and have suffered for 25 years with debilitating issues only to be told I’m perfectly fine on every test and there’s nothing wrong. Is there something I could do to help this process?

Alana Levine: Lupus is a diagnosis made by a combination of abnormal lab results and a particular set of symptoms. In particular, approximately 95% of lupus patients will have a positive antinuclear antibody (ANA).  If your doctors are convinced you do not have lupus, they may be able to offer some alternative diagnoses. If you are still concerned you may have lupus, you could see out a physician who sees a large number of lupus patients and has lots of experience treating the disease for another opinion.

Q6: My CRP has been at 16.6 for 4 years. ESR finally stabilized last year at normal range but had acalculous cholecystitis during the normal ESR. I still have inflammatory symptoms but no treatment?

Alana Levine: ESR and CRP are too blood tests that may be elevated in people who have inflammation in the body. They are nonspecific and may be elevated in the setting of active infection, trauma, recent surgery, or in the presence of active arthritis or autoimmune diseases such as lupus.

Q7: Is there something I could take to get rid of my fatigue so I can go back to work?

Alana Levine: Fatigue can be one of the most difficult symptoms of lupus to treat. There are no medications that treat lupus fatigue specifically. I encourage my patients to get adequate sleep, maintain an exercise schedule that is appropriate for them, and eat a healthy diet to increase energy. If sleep is an issue, you should talk to your doctor about sleep hygiene and techniques to improve this problem as it may be impacting your daily level of fatigue.

Dr. Alana Levine is a rheumatologist at Hospital for Special Surgery. She specializes in rheumatic autoimmune diseases including systemic lupus erythematosus, antiphospholipid syndrome, undifferentiated connective tissue disease and rheumatoid arthritis. 

Dr. Jane Salmon is Co-Director of theMary 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.

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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

Ida I. Santiago Correa says:

Actualmente padezco de Lupus y fibromialgia y estoy bajo tratamiento médico y aún así siento mucho dolor y un cansancio horrible y una quemazón en la piel o no se debajo de la piel casi no puedo ni dormir xq las piernas es un movimiento continuó y pienso q es xq todo la noche se mantienen moviéndose mucho. Gracias x sus consejos

HSS on the Move says:

Hola, Ida. Gracias por contactarnos. La Dra. Lisa Sammaritano, reumatóloga, contesta:

“Fibromialgia, un trastorno de dolor crónico, es mucho más común entre los pacientes que padecen lupus eritematoso sistémico que en la población general. Hasta uno de cada cuatro pacientes con lupus puede desarrollar síntomas de la fibromialgia con el tiempo. Cuando un paciente padece ambos trastornos, como usted, puede ser un reto saber si la fuente del dolor es el lupus, la fibromialgia o ambos.

Si tiene dolor relacionado con el lupus (dolor articular o artrítico, por ejemplo), entonces tiene sentido considerar con su reumatólogo un ensayo de Benlysta—es posible que, en combinación con la azatioprina (Imuran), ayude a controlar más a fondo los síntomas del lupus. Benlysta (belimubab) es un medicamento biológico que se administra por vía intravenosa una vez al mes.

En cambio, si tiene dolor causado por la fibromialgia (dolor muscular generalizado y sensibilidad al tocar), entonces los medicamentos para el lupus orientados a combatir la inflamación no harán efecto. Sería más útil conversar con su reumatólogo sobre los medicamentos indicados para la fibromialgia, como por ejemplo la gabapentina (Neurontin), la pregabalina (Lyrica) y la duloxetina (Cymbalta), si no los toma actualmente.

Usted está enfrentando un problema común para los pacientes con lupus. Es posible que le sea útil hablar con su reumatólogo y pedirle su opinión en cuanto a la causa del dolor. Entonces podrá tomar el próximo paso en su tratamiento.”

Si desea recibir tratamiento en HSS, por favor contacte con nuestro Servicio de Referencia a Médicos (Physician Referral Service) en 877-606-1555 para obtener ayuda.

Diane Kish says:

My daughter has been checked for lupus but the tests were saying she doesn”t have it. I have lupus, I am now 64 and it showed up 2 years ago. My daughter has very frequent migraines, what can she do?

HSS on the Move says:

Hi Diane, thank you for reaching out. Dr. Michael Lockshin, Rheumatologist, says: “A migraine is not a reason to look for lupus, even if you have it. If your daughter’s tests were normal, I would not pursue anything further regarding lupus, but would suggest the normal kind of evaluation that one cause for severe migraine, which might include a brain MRI.” It is best for your daughter to consult with her treating physician. If she wishes to receive care at HSS, please contact our Physician Referral Service at 877-606-1555 for further assistance.

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