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#1 Peggy


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Posted 01 February 2008 - 02:43 PM

My doctor called and decided to put me on Cellcept now rather than wait to see if they will listen to the appeal for the Rituxan. I was wondering if anyone else is on this and what I can expect and how it has worked for them. Any side effects?

I am hoping it will work as they have increased the pain medication as the pain has been so bad. I just want to get on something that will work.

Thanks and warm hugs from Minnesota.


#2 janey


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Posted 01 February 2008 - 05:04 PM

I've been on cellcept since last April. No side effects or problems from the medications that I know of. I was put on it as my immunosuppresant and to help stop the lung problems. So far so good. Here is our section on cellcept. It appears to be tolerated better than cyclophosphamide. I take 1500 mg in the morning and another 1500 mg at night. You're support to take it on an empty stomach. There are a few others on it. You'll probably hear from them as well.

I have very minimal pain so I have no idea if it will help with your pain issues. But I hope so!

Big Hugs,

Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)

#3 emmie


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Posted 01 February 2008 - 07:55 PM

Hi Peggy,

I've been taking cellcept since June of 2006. In april of 2007, the dose was increased to 2000mg per day. It was subscribed to me for another autoimmune condition but I think it had great scleroderma benefits for me as well. This skin on my hands began to soften and it seems to have stopped and improved the mild ILD I had going on. I tolerated it without any problems.

I'm not sure what kind of pain you have, but it didn't work as a pain reliever for me.

Good luck!


I hope you have good luck with it as well.

#4 rlbrussell


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Posted 02 February 2008 - 03:29 PM

I have been on Cellcept for 18 months now. I have had no trouble tolerating it but it did take awhile before I saw any improvements (6 months). My skin has softened a lot and my overall pain levels have improved, but it has been a long process.

Diffuse Sclero
dx Jan 2006

#5 Gidget


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Posted 02 February 2008 - 03:30 PM

Hi Peggy,
I am in the minority but I had problems with cellcept. It made me sick in that it made me dizzy, slightly nauseous, my feet swelled and I had break through bleeding and just felt crummy while on it. Since I thought it was my only choice, I sucked it up but when I visited the doctor, he pulled me off it right a way and said that it does make some people sick. Right now I am suppose to be starting Imuran but am a little concerned as I think it has more side effects then cellecpt. Anyway, good luck. I am sure you will be fine as based on the posts, I know I am in the minority. Too bad for me. Gidget

#6 Kamlesh


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Posted 02 February 2008 - 06:16 PM

Hi Peggy,

Cellcept is a wonderful drug to treat Scleroderma. I was on it for almost two years. My skin has softened and lungs have improved. It is important to know that it is very strong immunosuppressant and used to treat organ transplant patient after transplant for few months. So it has many side effects. I stopped about five months ago due to my Red and White blood counts were too low. I have stayed off for last five months and hope I will have to never go back on it. When I was on Cellcept, I had many side effects such as often nose bleeding, fatigue, and depression. Now I am doing much better. I have not gone for blood test recently, so I do not know about the bllod counts.

But, I am feeling simply great without it.

So, my advice is to use it carefully, monitor blood tests and other symptoms carefully, and get it off as soon as you can.

Take care!
Kind regards,


#7 barefut


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Posted 02 February 2008 - 06:47 PM

Hi Peggy,

I have been on 2000mgs Cellcept for two years. I have tolerated it very well. My rheumatologist says my skin has improved, in that it has softened, mostly in my hands. My pulm doctor said my lungs have remained basically stable (despite a 10% drop in my diffusion from 70% - 60% (?))

My pulmn doctor wanted to take me off Cellcept but rheumatologist wants to keep me on, and at current dosage because she is afraid that going off would increase my already increasing muscle and joint pain and loss of range of motion.

I'm not convinced that the Cellcept really does all that much for those pains but I'm also not so sure I want to go off it and find out that it does. I'll stay on for the time being.

I thought having young kids and taking an immunosuppresant, I would catch every bug the kids brought home, but weirdly enough, I have only had maybe one bad cold and one stomach bug (recently) in the past 2 years. If I did get what the kids had it was only very mild.

Get your flu shots on time.

Take Care,