Does anyone feel that this disease is like a roller coaster? When I'm not in a flare I can sometimes feel so good that I question whether I actually have this Scl thing. When I'm in a flare it's clear that I have it - there are no doubts. It makes me crazy. Is this normal? I was diagnosed in January and haven't really accepted it yet.
I just took my first dose of Methotrexate today. I'm nervous about the side effects. Can anyone tell me how soon I should expect to feel any and if it's possible not to have any. Also, how long does it take to see the effect of the medicine? My doctor said it can take 2 months.
Hi.
I was diagnosed a few months ago with Scleroderma ( anti pm 75). My symptoms were skin tightening of the hands and feet, gastro involvement, Raynauds, PBC, chronic cough, neuropathy, fatigue and muscle pain. I am being treated for each of the symptoms - no immunosuppressants.
Lately, I've been having severe pain in my feet, toes and legs and sometimes it's difficult to walk. I've also lost about 4kg due to nausea, lack of appetite, stomach pain. I also have pain in my muscles. My Rheumatologist doesn't think these symptoms are Scleroderma related - he suggested Fibromayalgia - but I disagree.
He suggested that I take Methotrexate but I don't know whether I should. On a good day without too much pain, I feel I can manage with symptomatic treatment. On a bad day I feel desperate for systemic treatment.
I'm not sure what to do. Do my symptoms justify taking immunosuppressants and what are the side affects? On the other hand I am often extremely uncomfortable.
I feel that if I start the Mtx I'll be "making too much of everything" and it shouldn't be a big deal.
I would really appreciate anyone's thoughts / suggestions.
Thanks 😊