Posted 25 December 2006 - 07:42 AM
Posted 25 December 2006 - 02:04 PM
I am sorry you are feeling discouraged. I take Cellcept but mine's soley for my lungs and it sounds like yours is more for skin, am I right? I was also told it can take several months to begin. What dose are you on, and have you talked to your Dr. about the anxiety you are having? I know some of us are taking up to 3 grams of Cellcept a day. I wish I had more answers for you, but CellCept is all I've tried. I've been on it for over a year now. I feel better since I have been taking it, although tests say a different story. I wish you the best.
Posted 25 December 2006 - 05:13 PM
What kind of problems are you having anyway? You can always send me a private email if you want.
I wish you the best of luck.
Posted 25 December 2006 - 09:00 PM
I understand your concern that your condition may worsen while you wait for the drug to take effect, I felt exactly the same way. I tried really hard not to focus on it(ha ! Ha!), at least daily I figure out how long I had been on cellcept. No real advice here, other than I was able to take that daily concern and turn it into a time of personal meditation.....
Initially I was put on cellcept to try to stop or slow the aggresive progression of my sclero. I developed mild lung in involvement two months into the drug and 7 months later my lungs have stabilized with no scar tissue and minimal inflammation. Recently I think there has been some reversal of the skin involvement, but it has a really long way to go and am unsure if it really is working.
Evert case is different....Earlier in the month I saw my rheumatologist and asked if I should change from cellcept, and if so what drugs would be next. She did not want to change, but indicated there are other options whcih may include oral ot IV cytoxan.
I hope the cellcept begins to wok its magic soon and with good results!
Posted 26 December 2006 - 07:35 PM
I've been on cellcept for 18 months now. It has stabilized my lung disease: remains mild--hooray. I have seen definited improvement in the skin involvement.
I didn't notice the skin immediately. It was very gradual. I want to say it was about a year before I noticed how much better my hands looked. They aren't beautiful, but they are no longer hard!!!
Even tho the skin is nice for vanity reasons, I'm most happy about the lungs even tho I can't see that! I hope you have some benefit soon.
Posted 27 December 2006 - 08:56 AM