Today is 6 months since I last visited Johns Hopkins and stopped taking any Cellcept. So far, so good. I've had no symptoms return since stopping the medication and my health has remained exactly the same as it has been. Well I guess there is one exception - I had to get glasses for the first time. It's related to getting old though and not with scleroderma.
When the weather has been warm/hot, I can't get enough of the heat. We've had a few real hot days and while everyone else (my wife included) complains, I'm just loving it!
I head back to see Dr Wigley in just over a month and will report back then. Enjoy the start of the summer.
4 comments:
Congrats! I am hoping and praying each day to have eventually have the same good news as you..for now, it's just more cellcept... ;P
I look forward to reading your updates. You give me hope. I have been on the Cellcept for one year and am not sure of when I will be able to stop taking it. I can see a difference in my skin...both the color and thickness. I am going to ask my doctor because my last urine test showed blood in the urine which could be a side effect. Good luck to you and keep posting!
Summer is THE state of year for sclero patient! I'm so glad you're doing well with symptoms. Hopefully you can keep up with that great spirit when things are not that well. But as much as that I hope those days will never pass your road.
Living With Sclero
Emmi
i was told i have scleroderma in 2000 and i have not had anyone i could talk with about it my friends say they understand but i don't think they really do, no one understands the pain or the discomfort i feel everyday all day my body hurts my legs swell along with my hands and feet all my doctors do is give me more pills, muscle relaxers now i spend my days feeling out of body and out of control.
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