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I just saw this post, but I find it very helpful. I have had Morphea since January, but have Lichen as well.. the doctors are not sure about the Lichen part, but the fact is that I have patches all over my body, from small red, open soars, and thickened skin. Mostly my upper body, but linear scleroderma on my legs and arms. I was hospitalized for a week and took all kinds of tests. I find the whole condition like hell! Itching, burning skin, and maybe the worst, the tightening of the legs. Need compression, difficulty with stretching and some time walking. I took Metotrexat for 5 weeks, but I believe it worsened my skin. Now I’m about starting with CellCept, and a bit worried- what will that do? But desperate at the moment, so I must try. I’ve lost quite a few pounds, is that due to the Morphea? So few people know about this condition, so I’m happy and hopeful finding this support group. This definitely is a horrible disease (but thankfully it’s not fatal).
Replies to "I just saw this post, but I find it very helpful. I have had Morphea since..."
@hildeirene Cell. Cept may be a problem for some folks but I took it for 2-3 years. Yes I did develope a serious problem (diarrhea), but was quickly changed to Myfortic which is very similar to cellcept except for the problem substance. Watching the clock to determine when to take the pills in relation to eating, was a real headache! Eventually, I started Rituximab every 6 months. I’ve only had one problem, which was major headache, and that was solved by slowing the infusion. (And insurance which didn’t want to cover it, but finally did). My autoimmune disease is CLIPPERS not morphea. Tell yourself every day that cellcept is there to help you! And you’re starting CC soon? Be sure to come back to MCC and tell me how you and cellcept
Are doing! I want to know!
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@hildeirene
Cellcept may be helpful with skin tightness. It may not be easy to tolerate, but you can stay on lower doses - as much as tolerated, even like 500 mg per day. More effective dose levels are 1000mg/day and above.
Rituximab IV infusions, which is a rheumatoid arthritis drug, is now being used off-label in scleroderma and systemic sclerosis. You may want to ask your doctor if they can get it for you.