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wgrebel
08-05-2010, 01:27 AM
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
08-05-2010, 01:54 AM
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
08-05-2010, 02:00 AM
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
08-05-2010, 02:20 AM
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
08-05-2010, 02:26 AM
Myfortic is an enteric coated, slow release for of Cellcept. I believe it is more expensive.

elephant
08-05-2010, 02:42 AM
Imuran did not work for me, knock on wood Cellcept has. No diarrhea!
Thanks JanW for that piece of info!

DEE
08-05-2010, 03:01 AM
[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
08-05-2010, 03:30 AM
elephant - did you need to be on cellcept anyway for your transplant?

wgrebel
08-05-2010, 04:21 AM
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
08-05-2010, 05:34 AM
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!

pberggren1
08-05-2010, 07:27 AM
Thanks JanW again for this wonderful information. What does asymptomatic mean?

elephant
08-05-2010, 08:18 AM
JanW, I was only on prednisone and cyclosporine for the kidney transplant, They took my off the prednisone after ten years....i asked if I could get off it. So the drug that worked for me is cellcept. I had a drug reaction to the imuran, so they discontinued it. I am a hard case because they initially didn't want me on cytoxan because of my kidney transplant and the other meds that I take probably would interfere....long story.

JanW
08-05-2010, 09:41 AM
Asymptomatic means no symptoms.

That's interesting about the imuran, elephant...my understanding is that a small percentage of the population actually lacks an enyzme (I could be wrong about this) that allows the drug to work which is why they test you for it beforehand. Was there a reason they didn't try mtx?

elephant
08-05-2010, 11:14 AM
I wanted to go on mtx, but they didn't want me too, something to do with my kidney transplant. So they came up with cellcept because it doesn't damage the kidneys. Can you believe I even asked if I could go on cytoxan! At that time I was really miserable.
JanW, so glad the mtx is working for you. My sister has been on it for over ten years and is doing great.

Sangye
08-05-2010, 12:06 PM
Tim, I had the same side effects from rtx, and also felt incredibly weak for days after each infusion. By the end of the month, I was in terrible shape. However, all those side effects went away by the 6th week (after the 1st infusion).

I had bad diarrhea and some heartburn on Cellcept. No other side effects. When I went on Cellcept, my Wegs was not under control as it should have been. So it smoldered for 2 years until it erupted into a full-blown flare. Dr Seo said that if we'd increased the Cellcept dose earlier in the flare (when I wanted to, ahem! :D) it probably would have stopped the flare. I think we both learned how active the Wegs really was before the official flare, though.

elephant
08-05-2010, 08:10 PM
So Sangye describe your symptoms on Cellcept- how did you know it was smoldering?

JanW
08-06-2010, 12:13 AM
Is your sister on mtx for RA elephant? It supposedly has been a godsend for those patients. The downside is potential damage to the liver but if your liver can tolerate it studies have shown no problem with long-term use.

elephant
08-06-2010, 12:36 AM
Yes, she was diagnosed at age 5 yrs old. Back then they gave gold shots to try to get the swelling down. She has been on so much medicine. She is on Methotrexate and Enbrel ( I believe)...she was even on prednisone 10 mg for 10 years and finally went off it. Of course she has osteoporosis.

Sangye
08-06-2010, 01:24 AM
So Sangye describe your symptoms on Cellcept- how did you know it was smoldering?
It was actually more than smoldering and quite active, just not enough to cause lung hemorrhage or make my labs look bad. (My labs usually look fine until the lungs start bleeding) The initial 7-8 months of ctx/ pred left me with ongoing severe joint pain, extreme fatigue, Wegs rashes, leg swelling, and difficulty breathing-- only a bit better than before I had done treatment.

Cellcept brought the joint pain down from severe, but it was still a major problem. If I did anything physical at all, the joint pain and general stiffness kicked up immediately. Same with the other symptoms. I always felt like I was on a dose that was just a bit too low--subtherapeutic-- but Dr Seo thought the symptoms were due to other things. Like he said "Nothing about you is black and white, you're all grey." LOL It's true. The only one who could tell it was Wegs was me, since I knew my red flag symptoms.

It wasn't until the rtx cleared up the joint pain and rash that I saw how active the Wegs had been the whole time on Cellcept. I think I would have been okay if the dose were higher.

elephant
08-06-2010, 01:46 AM
Thanks again Sangye for replying. I got my lab and urine done today. So it will probably take a week to find out the results, I guess they go back to Dr Langford.

pberggren1
08-06-2010, 03:13 AM
Tim, I had the same side effects from rtx, and also felt incredibly weak for days after each infusion. By the end of the month, I was in terrible shape. However, all those side effects went away by the 6th week (after the 1st infusion).

I had bad diarrhea and some heartburn on Cellcept. No other side effects. When I went on Cellcept, my Wegs was not under control as it should have been. So it smoldered for 2 years until it erupted into a full-blown flare. Dr Seo said that if we'd increased the Cellcept dose earlier in the flare (when I wanted to, ahem! :D) it probably would have stopped the flare. I think we both learned how active the Wegs really was before the official flare, though.

That just goes to show us that sometimes the docs don't know. But we know better sometimes because it is our own bodies and we listen to them day in and day out.