Rituxan Side Effects & Cellcept

[wgrebel]

I am two infusions into my Rituxan treatment. The first was July 19 & the second was July 30. Number three is August 10 & number four is August 17. I was on 60 mg of preds last week and now I am on 50 mg. My new rheumatologist, who has much more knowledge about WG that my old rheumatologist, wants me on 40 mg by August 10. After the Rituxan treatment is complete I am going to be placed on Cellcept & they are going to keep reducing my preds because according to the numbers right now my disease is not active. I would like to know what each of ya'll have faced with side effects of Rituxan. I have encountered the following:

-body aches
-sweating

Pain meds have not helped with the body aches. I am asking some of ya'll who have taken Rituxan in the past that if you experienced body aches do they go away after you finish the infusions. My next question is about Cellcept. How have some of ya'll done on Cellcept? I have heard it works very well & my new rheumy stated it was more effective that Imuran. What are some of the side effects you have faced with Cellcept. I am just glad I am off Cytoxan and am finally stepping off the preds. Thanks for any info you can give.

WG Rebel

[Jack]

The only side effect that I have that may be due to the Cellcept is diarrhea. I switched to the Myfortic version of the drug because is supposed to be better in this respect, but did not notice any difference so I may be wrong.

[wgrebel]

Jack,

Is myfortic the generic for Cellcept? If so I will be on myfortic instead of Cellcept as my insurance pays for generics when you get scripts filled. Thanks for your info. Tim

[JanW]

Tim: First off, I hope that your doc isn't saying that you disease isn't active based only on the numbers. There are weggies who do not get very high inflammatory numbers and are very, very sick with active disease, and others who have very high numbers (I count myself among these) and don't get very sick (but still have active disease). I was at the symposium this week and met people with complete kidney failure from WG who had lower CRP and ESR than mine for sure. That having been said, it is difficult to separate active disease from damage that the disease has already done that cannot be repaired, so your doc may attribute ongoing problems to the latter.

Secondly, with regards to Cellcept, the researchers at the conference said, "It's a Cadillac that drives like a Ford." Meaning hey, it's expensive but it's no more effective than what we knew about already. Jack's had a transplant and so he has to take it (as it was developed as an anti-rejection med), but for the average weggie research has shown that it is NOT more effective than Imuran. My doc also told me that it was being pushed in some quarters by the manufacturers but that the rheumys in his practice didn't have better clinical results with it. It also causes intractable diarrhea in about 10 percent of patients, which means they have to come off of it (unless they are transplant patients, I suppose).

Hope this helps. Imuran is supposedly the more easily tolerated drug.

[Jack]

Myfortic is an enteric coated, slow release for of Cellcept. I believe it is more expensive.

[elephant]

Imuran did not work for me, knock on wood Cellcept has. No diarrhea!
Thanks JanW for that piece of info!

[DEE]

[QUOTE=elephant;22003]Imuran did not work for me,
Elephant when u say it did not work do you mean itdid not control your symptoms or you had a flare with it
im asking as wg consut looking to move me on Rituxan OR Imuran or other they can decided until blood cultures and the next to blood results come back
decision day Aug 26th
DEE x

[JanW]

elephant - did you need to be on cellcept anyway for your transplant?

[wgrebel]

my kidney function is now normal below (1.3) and at one point my creatinine was .9 and it has stayed below(1.3). He is not basing it solely on the inflamatory numbers. All of the numbers from my last hospital stay, all of the tests & not just the inflamatory numbers, point to inactive disease.

[JanW]

My only point, Tim, is that your symptoms are as important as your 'numbers' regardless of whether those are values for inflammation or anything else. More than one story was told by the researchers at the symposium of 'numbers' being fine with a patient who knew 'something' was wrong -- and that person inevitably got sick which is why it is so, so important for all of us to 'listen to our bodies' regardless of what a lab test, pathology report or radiology report might say. And that is why my report on the conference is entitled "I Don't Know." The most eminent researchers in this disease say time and again that WG (and all vasculitides really) have tricked them, just when they thought they were getting a handle on the variability of these diseases.

If you are also completely asymptomatic, or asytomtomatic as far as WG is concerned, then that is wonderful for you!