Cellcept & Questions about what happens when you step off Prednisone???

[wgrebel]

I have just begun my first Rituxan treatment and I was able to tollerate Rituxan with no reactions. I have three more infusions to go & then I am going to be placed on Cellcept as my maintenance drug. My rheumatologist and specialist are also going to step me off the prednisone after the Rituxan infusions are complete. My questions:

What is Cellcept & how many of you have taken this drug? What are the side effects and how did you tollerate the drug?

When those of you who were stepped off the prednisone went through the process, how much was the step down, example was it: 60 to 40 to 20 or was it 60 to 55 to 50 & so on? It is my understanding you go on methotrexate when you are off preds & I would like some input on this. I am feeling better after my last hospital stay (got out Wednesday 7/21) after eight days. Still kind of weak but doing much better. The most wonderful news we received in the hospital was that my heart, which the WG attacked in March and caused me to go into CHF, is now back in the 50-65 percent range which is really good!!!!! It was at 20 percent in March 2010.

WG Rebel

[elephant]

WG rebel that is great news about your heart. I take cellcept 2000 mg a day, no side effects yet...been on it for 16 months. I am still trying to get off prednisone.
The prednisone taper is somewhere on the forum. Just look up prednisone taper. Hope you tolerate it too!

[Jack]

I have been taking Cellcept in its Myfortic formulation for many years. I've had no serious side effects and it has stopped my tendency to relapse. A good drug for me anyway!

Tapering Pred usually becomes a problem when you get down to the region of 10 mg. This is the point at which your adrenal glands have to start doing some work again and they may be reluctant. The exact point varies between individuals, for me it is right on 10 mg and I can't get below this because my adrenals are now shot. Of course, there is also the possibility of Wegener's flare occurring before the lower dose is even reached. If this should occur, you need to react fast and up the dose again.

[Sangye]

I was on 2,000 mg Cellcept for 2 years and tolerated it well. (I went on 3,000 mg for a month or two, trying to stop a flare) The only side effects I had were heartburn for about 30 minutes after taking it and chronic diarrhea-- a common side effect. They even call it "Cellcept diarrhea."

I don't remember how I tapered off those high doses of pred.

Jack, I don't think the adrenal dependency aspect comes into play until you get to about 5 mg, maybe 6 or 7mg in some people. Some people's adrenals are permanently dependent on 5mg or below. Tapering off the last 5mg is the most delicate.

The 10mg stuck point has more to do with the Wegs itself. Some people can't tolerate a lower dose without the disease flaring up. Dr Seo said it was common for those with sinus involvement to be stuck at about 10mg because sinuses kick up on lower doses.

Wgrebel, I never realized your screen name was WG Rebel. I thought your last name was Grebel!

[pberggren1]

There is Sangye's humour again. Hey, we are all rebels!

[wgrebel]

LOL, G Rebel I am just glad that I am off the Cytoxan and have found the right doctors to care for me. I dread the Cellcept Diarreaha. I am presently on prescription strenght Prevacid for my stomach. What kind of stomach meds do each of ya'll take? I have taken Protonix in the past but the Prevacid works really well.

W G Rebel in MS & as stated above were are all rebels

[pberggren1]

I have been on Cellcept for about 19 months and never experienced diarreaha.

[elephant]

I am on nexium every other day and no diarrhea, but I take culturelle for the stomach too.

[Sangye]

Maybe you won't get the diarrhea. I drank aloe vera gel each day and it helped a lot. I'm now allergic to aloe so I couldn't do that again.

I only take protonix when I'm on over 4 mg pred. It's necessary with pred. Otherwise, my meds don't give me heartburn and I balance my stomach acid naturally. Unless you specifically need an acid-blocker because of the meds, it's usually doing the exact wrong thing for the stomach. Most heartburn is the result of insufficient stomach acid, not excess.

[Jack]

I switched from Cellcept to Myfortic because it is slow release and supposed to minimise the bad effects on your digestive system. I can't say that this worked for me, but perhaps I would be even worse without it.

Sangye - you are probably right about the critical Pred dose being closer to 5mg and this is what I used to quote when answering these questions, but some people seem to run into problems earlier so I now use 10mg as the point at which it is possible for trouble to start. I suppose I think that I am just forewarning them.