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Scleroderma (Systemic Sclerosis): Anyone else?
Autoimmune Diseases | Last Active: Jun 6 10:18am | Replies (93)Comment receiving replies
Methotrexate, which is RA drug, is prescribed for scleroderma. Also, Actemra and Rituximab (both RA drugs) are prescribed for ILD lung disease in scleroderma. Mycophenolate or Myfortic are also prescribed for skin and lung involvement. Your doctor is correct, none of these drugs were originally developed for scleroderma. They are used as immunosuppressive agents already approved for other indications.
How did you manage to get better without taking immunosuppressive medications?
Usually, patients are started on methotrexate, if joint stiffness and skin involvement are present. Then Cellcept (mycophenolate) is added. If you are not taking any medications but Pantoprazole, you may want to ask for oral mycophenolate to stabilize the disease. It has some side effects, as all drugs do. Methotrexate is a chemo drug, self-injected. It may have more side effects but can also be more helpful with symptoms of arthritis. Talk to your doctor or find another rheumy who treats scleroderma.
Replies to "@80skw Methotrexate, which is RA drug, is prescribed for scleroderma. Also, Actemra and Rituximab (both RA..."
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@altabiznet
Wow, all those meds! I feel somewhat overwhelmed.
But I will try to answer the question about how I got better. At first my PC doc had me on (lisinopril?) to reduce the swelling (edema?) in legs,ankles,feet. And started oral iron supplements (blood values were low). And I think a steroid for a short time. I am afraid I may have blocked out some of that time in some denial or something. I have always eaten a healthy diet but I altered that somewhat to try to alleviate GI symptoms. Oh yes - gi doc had me on an antibiotic to reduce bacterial overgrowth (had a lot of diarrhea). I tried to continue/increase exercise as I became able. And then, I don't know-just got better.
I guess I have a mild version of the disease. Even now I have periods of flare up and regression. I asked Rheumatologist if I could have been misdiagnosed. She said I had all the antibodies, blood indicators of scleroderma. So, don't know. I have sometimes thought that my Rheumatologist is restricted in what meds she can use by the HMO and is not able to use newer, maybe experimental ones.
Anyway, thank you very much for your answer. I am trying to learn everything I can. It can be hard to discern legitimate, scientifically supported sites, advice.