Scleroderma

[Jaflynt]

I have raynauds, scleroderma my lungs are real bad on oxygen all the time. I'm on lots of medicine about 3 weeks ago they put me on 3000 mg of cellcept a day not sure if it's the cellcept but have more diarrhea and Im tired all the time is this normal

[Irene55]

It could be the Cellcept causing more tiredness. When I was first diagnosed I had Scleroderma with Polymiositis overlap. For one month I had only Prednisolone and by the end of the month I felt more full of energy than I had for a long time. Then I started of the Cellcept (Mycophenolate) and almost immediately felt tired again, the constantly having to go the toilet 6 or more times a day I had had for a year or so previously and it hasn't really changed since. This seems to be a problem for many with Scleroderma I think. Apples make it worse for me. I like them but avoid them most of the time.

I luckily don't have problems with internal organs but I walk a lot to keep fit. I walk at least 30 minutes a day and in the beginning after being diagnosed I used to walk one day and needed the next to rest. Tiredness for me is the worst part of this illness. It is worse in cold weather, the Raynauds uses all my energy to keep warm. I like the hot weather, I have much more energy then.

I hope you feel better soon, you can only listen to how you feel and rest when you need to.

[LucyJean]

Hello there, it is almost certainly the increase in your dose of cellcept (MMF). Any change in your normal habit that happened in conjunction with a change in medication is going to be the likely culprit. Tiredness and bowel habit changes are normal in scleroderma, but you will know what is normal for you I am sure. Talk to whoever prescribed the medication change as soon as possible and tell them what is happening. It is important to report ongoing diarrhoea because it will quickly make you unwell. You will not be getting the nutrients from your food and you will not be getting the right doses of your medications...they will all be going straight through. Make sure you are getting plenty of fluids.

All my best

Lucy x