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Sunday, June 26, 2016
Are There Any Other Medications I Could Possibly Take and What Are The Mortality Rates?
I have sarcoidosis in my bone marrow that is spreading much more quickly to other sites despite treatment with plaquenil, trental, and humira injections. (steroids made me worse) My rheumatologist was not comfortable prescribing remicaide due to his concern with antibody cross reactivity. My husband, an internist, read about and was concerned with enbrel due to an abandoned study with sarcoidosis. I will be meeting with a fertility expert to inquire about egg extractions and preservation. Besides methotrexate, do you recommend any other medications to help stop this spread? I have had to stop working. Finally, with the sarcoidosis spreading to almost all bones (hands, feet, humeri, ribs, femur etc) what are the statistics on mortality rates? I do not have any other organs with involvement.
Sarcoidosis involving the bone marrow can be a difficult situation to manage. Treatment with corticosteroids and "steroid-sparing" agents such as methotrexate is a common first-line approach. Other alternatives include azithioprim, cyclophosphamide and other drugs that suppress the activity of the immune system. It is common to use a combination of these drugs in order to minimize the side-effects and to take advantage of the likelihood that the drugs have an additive effect. Potent anti-tumor necrosis factor (TNF) drugs (Remicade) appear to be very effective for certain manifestations of sarcoidosis (e.g., severe skin disease). Thalidomide is another type of anti-TNF drug, but it has potentially serious side-effects and can cause birth defects.
As is apparent from this brief summary, there is no standard approach to the treatment of sarcoidosis involving the bone marrow, and a great deal of thought has to go into deciding the best approach. You are wise to meet with a fertility expert because many of the treatment options could increase the risk of birth defects.
There is not a great deal of information relating to the long-term prognosis of sarcoidosis involving the bone marrow. In fact, the natural history of sarcoidosis is generally not well understood. In my own experience the progression of bone marrow disease is manageable with one or more of the agents that I described above. I am not surprised that plaquenil or trental did not work. A combination of corticosteroids + methotrexate (or azithioprim) is usually more effective. I reserve Remicade or thalidomide for cases that are resistant to other treatments. I try to avoid cyclophosphamide in younger patients given the high risk of bladder cancer years after treatment.
You are advised to discuss these options with your physician.
Elliott D Crouser, MD
Associate Professor of Pulmonary, Allergy, Critical Care & Sleep Medicine
College of Medicine
The Ohio State University