CellCept questions...

[debhaz22]

Hi,
Just back from JH and the Dr. doesn't like the effects the MTX is having on me, so he's starting me on CellCept. I know nothing about it, I don't even know anyone who is on it and that makes me very nervous. Can anyone fill me in?
Thanks so much,
Deb H. :confused1:

[Alysia]

Hi Deb,
I don't know anything about cellept, but to make you calm, I remmeber many around using it, and feeling good with it. mtx didnt work for me either.

[annekat]

I seem to remember Sangye being on Cellcept for a time. You might PM her. And she has the same doc you do, as you know.

[crackers]

I've been on cellcept for seven years now and except for a slight hiccup at the start,i was started on too high a dose,i've been fine and it's worked well for me.i'm currently on 2 grams a day.i hope it works as well for you as it has for me.
john.

[debhaz22]

Hi John,
Do you know what dose you started at? The only side effect was hiccups? Are you in remission?
THX :)

[crackers]

hi Deb
over here in the UK a slight hiccup means a small problem.i started on 3 grams but developed pneumonia because of it.i came of it for a while then restarted on 1 gram which gradually increased to the 2 grams I'm currently on.i haven't had any serious WG episodes for a few years but I've been pred free for the last 5 weeks and I'm beginning to experience a lot of joint pain and extreme lethargy.good luck on cellcept just beware of starting on a high dose.
john

[RudiK]

Hello Deb, I relapsed in February and was put on 3g of Cellcept (3 pills at 500mg in the morning and 3 pills at 500 mg in the evening). The only side effect is some intestinal discomfort. Other than that no problems. I'm also on 10mg Prednisone.

[aewaustin]

As everyone knows folks all respond differently to meds, so you never know. But my experience was horrible, it made it so that I could not sleep, like not at all. Now I am more in tune with my body, and I would know to get off it, but years ago when I took it I wasn't. Just make sure that you pay attention to what is going on and if things get too weird then get off it.

[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!

[jmmilliorn]

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.)

[jmmilliorn]

I couldn't take MTX either. Cellcept worked better for me but had a lot of side effects--posted elsewhere above. RTX is doing the job now without Cellcept so far. I feel better.

[Jaha]

Mike,
I also am treated by Villa-Forte at CC. I'm really hoping that she will soon say that i can cut the cellcept out. I think sometimes i really am confusing to the docs, because I also have COPD and fibromalgia. They tell me I'm an interesting case, I don't know if that is good. I would like to talk with you sometime, if you would like to private message me, please do. It seems we have a lot in common. Take care!