Has anyone with raynauds and diffuse scleroderma tried biologics?

[cherylann]

[KFScleroderma]

Yes. I've been on several in the past. I found them generally helpful. My dsDNA turned positive while on one if them. One of my doctors was concerned while one was not at all worried about this (possible sign of drug-induced lupus, but I had no symptoms). I went off when I had my stem cell transplant. I still have a lot of arthritis. I miss my biologics. :). Glad to answer any specific questions. Oh FYI did not change my lung progression but they helped my arthritis a lot!

[cherylann in reply to KFScleroderma]

Thanks for your answer. What biologics were you on and which did you find the most helpful?

[KFScleroderma in reply to cherylann]

Hi, Cherylann,

I have diffuse scleroderma and severe Raynaud. The biologics did not help my skin much, did not improve my Raynaud symptoms, and did not slow the internal progression of my disease. However, they made me feel a lot better.

I tried Enbrel and Humira first. The most effective for me was Simponi, but it was also the one that caused the most lab abnormalities. I felt better on all of them. It was easy to do the self injections. I had the stem cell transplant in 2010. Now I am trying CellCept, as my disease has recurred once again.

Good luck!

Let me know if you have additional questions.

[DebKate]

I heard from a nutritional m.d. that proteolytic enzymes are helpful in reducing fibrotic material in the lungs...I would see a nutritional m.d. before I started anything new, though...those of us with C.R.E.S.T and scleroderma really need an answer for our lungs...is it okay to mention who I see? It is Dr. Don Colbert in Florida...he is a medical doctor and a nutritional m.d. Those are difficult to find, and can be expensive; however, he helped me get back on my feet 6 years ago...when fatigue had me completely down.

Blessings to everyone on your journey to restored health!

Debbie

PS: I am fighting C.R.E.S.T...for 6 years now.