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smac0719

Cellcept vs cyclophosphamide - part 2

6 posts in this topic

Hello all...it's been a while. I had a visit with my sclero specialist and he suspects some lung involvement as a result of a ct of my chest. I have an option to start taking cellcept 500mg 2x a day or enter a clinical trial where I may receive cellcept for a year and a plecebo for a year or cytoxan for 2 years. I found a post from 2008 with some thoughts about both. Is there anyone taking either of these meds now or has taken them within the past year or so? I'd like to know any thoughts on the effectiveness, side effects, etc...


I may have Scleroderma, but Scleroderma doesn't have me!

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I've been on Cellcept (3 grams/day) since spring of 2007. I was switched to cellcept after having a bad reaction to oral cytoxan. Since I started on cellcept my lungs have become stable. In 2009 my rheumatologist reduced the cellcept to 2 grams/day and just 2 weeks ago, I got to drop another 500 mgrams. Nothing new has happen sinced cellcept, everything is stable and some things have gotten a little better. To date I have absolutely no bad side effects (that I know of). I've been on 4 different immunosuppressants and I've tolerated cellcept better than any of them.

 

That's my story. Good luck in whatever decision you make.


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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Thanks Janey for the response. I have been on methotrexate since 1/07 and it has been increased from 10mg to 25mg over the past 4 years. I've had good success with it in terms of the tightness of my skin and discoloration improving as well as the fatigue and overall achiness, but I guess it doesn't work for lung involvement.


I may have Scleroderma, but Scleroderma doesn't have me!

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Hi Smac0719,

I've had IV Cyclophosphamide over a 6 month period just under 2 years ago. In my case it was very successful in treating the inflammation and fibrosis on my lungs and apart from feeling a little "liverish" and queasy after each infusion, I suffered no real side effects at all. However, I would emphasise that the same medication does affect different people in different ways so can only reiterate my own experience of the drug.

I've not taken Cellcept so can't really advise you about it but I have included a link for Cellcept and cyclophosphamide which I hope will give you some more information.

I do hope you get a positive result with whichever treatment you decide to take.


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Thank you Jo. I was supposed to speak with the clinical trial coordinator today to get more information about the study, but that didn't happen as planned. Hopefully we'll connect tomorrow.


I may have Scleroderma, but Scleroderma doesn't have me!

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Hello Smac0719

Although I had to stop cellcept after 10 months due to crippling headaches I have only heard positive feedback about cellcept from others on it. Mind you I also know of people who have had great results on cyclophosphamide. Fat lot of good I am eh? laugh.gif

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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