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Scleroderma (Systemic Sclerosis): Anyone else?
Autoimmune Diseases | Last Active: Jun 6 10:18am | Replies (93)Comment receiving replies
@becsbuddy
I am 80 years old and was diagnosed with diffuse systemic scleroderma about 4-5 years ago. Was always very healthy and fit and active previously, no other big issues. It was horrible when I was first diagnosed, felt awful-just crashed, could hardly move, had many different tests, swelled up. Finally docs said scleroderma. Doing so much better now, have mostly learned to live with, manage it. A big question I have is that my rheumatologist said there are no drugs to target the actual immune response (as in RA for example). She says they can only treat the effects, symptoms) I have taken thyroid medication since my 50's. The only med directly related to scleroderma is pantoprazole for upper GI issues, started a few months ago when reflux worsened. In reading the discussions I see many drugs mentioned for scleroderma. Is it true what my doc told me, that they can't suppress the actual immune response in this disease?
Replies to "@becsbuddy I am 80 years old and was diagnosed with diffuse systemic scleroderma about 4-5 years..."
I'm sorry to hear you've been diagnosed with scleroderma. It's a difficult disease to manage. Many of the medications used in rheumatoid arthritis are also used in scleroderma. Mycophenolate is used to reduce the immune system's response and reduce inflamation, and newer drugs like Jascayd are used to slow the scarring process in the lungs, which is usually the primary cause of death in this disease.
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.
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@80skw “Can any of the drugs meant for scleroderma suppress the actual immune response?”I honestly don’t know the answer, sorry. I am not knowledgeable of all the drugs which treat autoimmune illnesses, but let’s ask the other folks in this discussion.
Can anyone help?