Originally Posted by
Jaha
Deb,
I've been on cellcept for almost 2 years, i take 2-500 mg twice a day. This is after all the other meds didn't hold me. I also have had 3 rounds of rtx and I'm on 12.5 preds(tapering down hopefully this time) and bacterium 3 times a week. I have a lot of dizziness,headaches,nausea and get uti's freq. I told my doc that I thought I was feeling like I was being poisoned, she replied that cellcept was the only thing that holds down my inflammation. I did read that it can build up in your system, but for now that is all I can take. She did tell me my last appt that if we see that doing the rtx every 6mos works that I might be able to go off of it. On a good note Ihave only been hospitalized one time in a year. Everyone reacts differently and I am wishing all the best with your journey. Bless you!
My experience with Cellcept sounds a lot like yours. All the other Wg meds made me even sicker. This was all that was left. I had all your symptoms. The diarrhea was the worst I think. Half my day. Really limits what you can do and where you can go. I thought I was actually going to die the latter part of 2013 I felt so bad. I was picking out songs for my funeral. I had sinus infections as usual and couldn't get rid of them. I am being treated at the Cleveland Clinic. I do take two Rituximab infusions twice a year since 2011 and that has helped the most I think. Doctor Villa-Forte talked with me about my worsening daily condition. She said my labs looked OK, but I felt absolutely awful. Every time I got down to about 12mg pred, I'd have a flare up in my legs and feel bad all over to boot. She let me reduce my Cellcept and that helped a little. I had begun skipping pills on my own because they are hard for me to swallow and because they made me so sick. Finally, she let me quit taking Cellcept altogether and treated the sinus infections with a strong antibiotic. The thinking was that the Rituximab was keeping the WG dog asleep well enough and that without the immune suppressant Cellcept and with the help of the antibiotic I could get over the serial sinus infections. It worked pretty well. I've been off Cellcept since the beginning of the year and the symptoms are lessened but not gone completely. I guess the Pred has similar side effects. I'm down to 9mg Pred right now--the lowest I've been in my four years of WG, but still having sinus issues. Taking antibiotics again. (I take bactrim 3 times a week normally but I'm using Levaquin right now on the infection.)
J. Mike Milliorn, Santo Texas
Diagnosed Jan. 2011
at the Cleveland Clinic
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