Hi @cathiz, welcome. @daisydo also has scleroderma. You may both be interested in these discussions:
- Starting cellcept for scleroderma: How does it work? Side effects? https://connect.mayoclinic.org/discussion/starting-cellcept/
- Scleroderma, Limited https://connect.mayoclinic.org/discussion/scleroderma-limited/
- Video Q&A about Scleroderma https://connect.mayoclinic.org/event/video-qa-about-scleroderma/

Your experiences would be most welcome to fellow members

I was diagnosed with Dermatomyositis with MDA5 antigens and with interstitial Lung Disease in January of 2021, my rheumatologist wanted me to get on Cellcept. Medicare and my insurance company BCBS wouldn’t pay for it, my doctor appealed it three times. The reason they gave for denying the appeal was, because it had not been approved by the FDA to treat Dermatomyositis. So I am wondering how you were able to get Cellcept. I would like to find a way to get Cellcept.
Thank You, Kathryn

Hi @cathiz

Thank you for your response. I guess I must've checked the wrong settings way back when I posted my original post because I've never gotten notifications that folks responded. I just assumed it was crickets on here!

I'm sorry to hear you were diagnosed with scleroderma, but I'm also glad that you were able to get a diagnosis, especially since you were able to find relief in treatment early on.

I never did get any definitive answers from doctors in Germany. After a couple years, I stopped trying. One doctor recommended a gluten-free diet for five months, which was really tough (and expensive) to maintain and had zero benefit. Another doctor - ironically - recommended I stop going to doctors to figure out what was wrong. I say ironically because he might've actually been right (for my personal situation - definitely NOT suggesting anyone else give up looking for answers to their own health problems!)

My health continued to improve on its own, with a lot of patience, gradual return to the physical outdoors sports I love, and really just time. Considering how stressful doctor appts were, it was easier just learning to cope with the symptoms than dealing with dismissive medical staff on top of it.

Interestingly, my ANA titres stayed sky high for about the first year, then gradually declined as my symptoms improved. I'm not sure I'll ever be at 100% like I was before this crud hit six year ago, but I'm a LOT better than I was.

Back in 2006, I had a similar illness, though less severe, that developed in much the same way but wasn't as severe and didn't last as long. Makes me wonder if it is some sort of relapsing autoimmune disease? Maybe it's just a recurrent virus? I might never know. I'm always half expecting it to just suddenly hit again, but I'm grateful for the reprieve now.

~Carrie