I’m sure this has been asked at some point so forgive me if I’m repeating a thread. I saw my rheumy yesterday and he is taking me off of chloroquine, increasing the medrol and starting me on cellcept. I’m curious as to other’s experience with cellcept and it’s side effects etc. he faxed it to my pharmacy and then the pharmacy called and said that my insurance says it’s needed to be ordered from a specialty pharmacy. I should be receiving UPS tomorrow. I’m just a little nervous with the holidays around the corner if I will be feeling crappy.
I had no side effects until I went on very high doses. And. I still don’t know of that was due to other things I was having ulcers and everything but I was also in the middle of a flare. Try it. I’ve heard wonderful things about cellcept. It’s worked great for lots of people.
I have been on 500 mg twice a day since Oct. 13th-no ill effects. This is a low, "intro" dosage, and since I am tolerating it well, the dose will increase soon, possibly to 1500 mg daily (depends on levels in pending blood work). I was terrified to start it, fearing the side effects. I have been in a pretty heavy flare for 27 months, and this is the best I have felt since the flare began (it was brought on by emergency abdominal surgery that had nothing to do with lupus). After I did some research and found out that Nick Canon (yes, Mariah Carey's husband!) is on it, I figured with all the resources available to him, if it's good enough for him, it's good enough for me!
Good luck! I hope it helps you!
Cellcept did not work very well for me, can’t remember what the side effects were (damn brain fog) but they were bad enough for me to stop it. Trying rituxan now but the last infusion triggered a full flare, woke up with the rash across my face and couldn’t move for several days from the pain. May have to go back to cytoxan at some point. Do try it though because if you tolerate it, it really helps.
Thank you . I didn’t know that’s what nick cannon is on too. I knew about the lupus nephritis but that’s a good point.
I started it today. I was
A little fearful (okay … A lot) of getting sick but just had lil nausea n a very gassy stomach ache. We will see how it goes I guess.
Good luck. I'll be thinking of you. I really didn't want to start Cellcept, but do want to keep my kidneys working as well as they can. This med has worked for so many people, I figure that it can work for me. This will, hopefully, allow me to back off the pred (15 mgs daily) since my BP has been very high for several months now. Acute kidney failure and a "surprise hospital vacay" in August. Grrrrrr. Like you, I was very frightened, but knew that I had to do something (and, weirdly, the Nick Cannon info really calmed me down. I know, welcome to lupus land, where I hold on to any possible positive idea!!!).