← Return to Scleroderma (Systemic Sclerosis): Anyone else?

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@becsbuddy

@kimberlyfarasyn Welcome to Mayo Clinic Connect. This is a great group of people and I’m sure that they will help you! But first, can you tell us about the multiple issues you are dealing with? How long have you had Sclerosis/systemic sclerosis? Are you receiving treatment ?

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Replies to "@kimberlyfarasyn Welcome to Mayo Clinic Connect. This is a great group of people and I’m sure..."

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.