Cellcept

[Chris G]

I saw my docs today, and they feel I need an additional drug to knock wg down - I agree because I didn't make it 6 months with the 1st round of rtx, before symptoms started creeping back. I'm to start cellcept - 1500 mg (working up to that, with a lower starting dose).

I'm scared!! My sister-in-law has been taking it for lupus and she was throwing it up!! I told her to try it with food, which I read here, might be ok. She no longer throws up, but still has bad stomach upset from it.

Could you all please share your experiences with it? Your dose? With or without food? Stomach upset or not?

Thanks guys and gals!

[Sangye]

I was on 2,000 mg/day for about 2.5 yrs, and on 3,000mg for a month or so. I didn't have any side effects at all other than some diarrhea. It was a pain, but not a deal-breaker. I took it with food.

Most people tolerate it just fine. The most common side effect is diarrhea, which can vary from mild to severe. If it's too severe they take you off of it.

Personally I prefer Cellcept to chemo. It's a targeted therapy without all the mutagenic and toxic side effects of chemo.

[Jaha]

Chris G,

I am currently on Cellcept 2000mg per day. I haven't noticed any side effects, but I just started it in Nov and had to go off it while I was on antibotics because of 2 bouts of infection and my doc said that I will remain on it while I'm doing the infusions of RTX.
Jana

[Chris G]

Thanks guys. Good info. I'm still dragging my feet. I haven't picked up the script yet. Not sure how to work it in my schedule - twice a day sounds like a real pain! I take most of my meds with food, and I don't think I'm supposed to take cellcept and other drugs at the same time. I don't want to eat MORE often! Ugh

[Sangye]

I don't remember cellcept interfering with any other meds. I took it with my morning meds and with dinner.

[elephant]

I take my cellcept with food. So far so good.

[RCOSSIO]

Been on Cellcept 3000mg since 2009...and I usually take it 2-3 hours before eating.

[Widthofacircle]

Been on 3000mg for about 18 months now. I take 1500 first thing in the morning and the balance around dinner time. I have had no real problems
Brendan

[Twice]

I've been on and off Cellcept. I really like it in terms of the lack of side effects and have found it very effective as a control drug. In the past I have been on long term maintenance of just 250g twice a day, but the docs tried to take me off last year and I'm now flaring again. Back on 2g daily. Initially I had some diarrhoea but found that taking 250g x4 per day for about a month allowed my guts to acclimatise. I then went back to 1g x2 (less bother!). My experience has been good, but it does seem to be a personal response. I've heard of people for whom it's really unpleasant.

[aewaustin]

Not to scare you, but I had a horrible experience with Cellcept at a fairly low dose of 1000mg. It made it so I could not sleep, I was taking 10mg of Ambien at 10pm and 2am and still not sleeping. It was like I was being shot with a low current of electricity. I had an idiot of a doctor and I called him crying saying that it was screwing me up at 500mg and he upped the dose. It caused my kidneys to go haywire to the point that I saw a Kidney doc and she put me in for a biopsy the next day. So again not to scare you, but really monitor your body for any changes when you start the med. Finally I saw a doctor that asked me why I was taking it and I said because of this doc, he suggested I stop taking it and within 48 hours I felt the most normal I had for that long long month. (and I think these were the right doses but this was back in 2004 so I am not totally sure)