CellCept & Prednisone Questions

[wgrebel]

I have made great strides in the last month as far as my Wegs goes. I came of Cytoxan July 14, 2010 after I was hospitalized due to the crippling effects the Cytoxan had on my immune system. I could no longer tollerate a theraputic dose of Cytoxan so my doctors began Rituxan therapy July 19, 2010. I have now completed my four Rituxan infusions and have started Cellcept. I am on 1500 mg of Cellcept a day (2 in the am and one in the pm). When I went into the hospital July 13, 2010 I was on 60 mg a day of preds. I am now down to 35 mg a day until Tueday 8/24/10 when I go to 30 a day for a week & then 25 a day for a week & then 20 a week. My rheumatologist has not said what will happen when I get to 20 mg a day. My questions follow:

What is the SOP for stepping down when you get to 20 mg of preds a day? Is is five a week until you get to 10 or is it slower? I am ready to get off the preds ASAP

I have tollerated the Cellcept and the only side effect I have had is diarreah (sp). However, I have began taking immodium and that seems to throttle this side effect and make it more bearable. My questions about Cellcept follow:

What kind of side effects have each of you who are on Cellcept encountered? What is your dosage of Cellcept? To anyone who is in remission, do you stay on Cellcept or some kind of maintenance drug like methotrexate once the doctors declare you to be in remission. I have had good numbers the last few times I have been to the doctors and I pray that remission is around the corner for me but I know it will be awhile. One thing you must learn with Wegs is to be longsuffering. Wegs is like playing hide and seek except you (the weggie) are always "it" and you have to look for your opponent (the WG and what it does to you) blindfolded while it hides at the same time. Thanks for any advice and questions ya'll might have.

On a more personal note I have had the best week as far as feeling good in 4 months & my employer has just informed me they are shipping me a new laptop, PC, document station, shredder, & supplies to set up a full office at home. I have been working at home part of the time and my office the other days but home is much easier.

Hope all are well.

WG Rebel "your friendly neighborhood Weggie from Mississippi"

[Jack]

Glad things are going so well.

I think 1500mg of Cellcept is the usual dose, but I take the equivalent of 1000mg. I take the enteric coated form called Myfortic which is supposed to be easier on the stomach and less prone to diarrhea although it did not seem to work that well for me and I still suffer from it. In my case, I will take it for ever because I've had a transplant otherwise the next step for someone in remission would be to try going drug free or perhaps just Bactrim.

Pred withdrawal usually does not become a problem until you get down to at least 10mg and more likely 5mg so I would not worry too much until you are at these levels.

[JanW]

Have not been on either but will say that the docs at the symposium said that for those that suffer from intractible diarrhea on the cellcept that imuran is an equally effective option. In fact, they prefer imuran generally simply because diarrhea is a well known common side effect of cellcept that doesn't always go away. Dr. Peter Merkel from Boston University said that Cellcept is a "Caddy that drives like a Ford" because it isn't more effective than imuran, just a lot more expensive and pushed much harder by its manufacturer, hence current doctor interest in the drug.

Of course our fellow weggies who have transplants have to take this medication; this is the purpose for which it was originally developed anyway.

I've always heard cc, imuran and mtx put in the same class -- mtx isn't necessarily a step down from either of these and I would assume that the step down in cc is to an attempt at drug-free maintenance.

[Sangye]

The typical dose for Cellcept is 2,000 mg. I was on that dose for 2 years and did have chronic diarrhea. It was manageable, but definitely had to be near a bathroom after a meal. The rest of the day was okay.

Personally I'd rather take a targeted drug like Cellcept than a chemo drug like imuran. Cellcept doesn't do the collateral damage of chemo. I acknowledge that many people tolerate imuran well, I just get the heebie-jeebies thinking about being on chemo. That's just me and shouldn't influence your decision.

[marta]

I can't speak for the immunosurpressants as I've only been on cyclophosphamide, but I'm in almost the same boat as you on the steroids. I'm at 25mg right now, started at 60mg. The wean has been 5mg a week, and my doc said once I get to 20mg it's 2.5mg every 2 to 4 weeks, depending on how I feel and lab results. I think that once down to 10 it slows down even more, but that's mostly based on what I've been reading on this forum. I was supposed to go to 20 today, but I'm holding off just because I've been feeling a little funky this week and I'm not sure if it's because of the wean or the intense smoke in the area from forest fires.

[elephant]

I'm on cellcept 2000 mg and been on it for about 18 months. So far knock on wood no diarrhea!

[Natalie]

Hi Wgrebel ,, Im on 3000mg Daily and have been for atleast 5 yrs 3 in morning 3 at night . never had a problem with them .

[Jack]

That sounds like a lot considering that I've been on 1000mg for 15 years with no trouble.

[Sangye]

It's great to hear how well you're doing WGrebel. Kudos to your employer for making it possible to work from home.