I was diagnosed with Systemic Sclerosis in June of 2023. At the time I lived in TN and the rheumatologist I was referred to wasn’t very knowledgeable in treating my condition. They found that I had esophageal dysfunction and pulmonary fibrosis as well as microstomia and other facial changes. In March of this year I moved to Ga. Since then my condition has worsened. My ILD has progressed, I have severe GI problems now and I’ve lost the padding in the bottom of my feet. Walking is almost impossible. I no longer recognize myself due to the facial changes.

I was diagnosed with systemic sclerosis 2000, but I had symptoms (Raynaud's, hardening and thickened areas that would come and go) since 1980. In 2000 my fingers and wrists started looking like puffy paws. That is when I was officially diagnosed. I raised a severely disabled son so pretty much ignored my own health for 20 years. I am no longer able to ignore the overwhelming fatigue, pain, joint stiffness and bowel issues. I just learned that my ANA numbers are over the readable limit at the rheumatologist's office that I just recently began seeing. I have been prescribed Cellcept, but I have not started taking it due to the very frightening potential side effects. I am vegan, try not to eat any sweets or processed food, exercise daily and try to eliminate stress, but I would love to hear what has worked for other people, and if anyone else has taken Cellcept for systemic sclerosis.

@becsbuddy

@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?