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Thread: Cellcept???

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    Default Cellcept???

    Has anyone been prescribed Cellcept for WG/GPA? It's supposed to be maintenance after remission is achieved, but my doc has prescribed it with high pred after Rituxan has failed to produce any results (so far). I'm not in remission, very high CRP and sed rate still. Curious about side effects.

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    Quote Originally Posted by bdawg212 View Post
    Has anyone been prescribed Cellcept for WG/GPA? It's supposed to be maintenance after remission is achieved, but my doc has prescribed it with high pred after Rituxan has failed to produce any results (so far). I'm not in remission, very high CRP and sed rate still. Curious about side effects.
    I take Cellcept as a maintenance med! I started on Cytoxin and then moved to Cellcept after the Drs felt I was in remission. Still take pred and always will! I do Ritoxun IV's every 6 to 8 months as a mean to help keep me in remission! As for the question of Cellcept side effects, there are none that I am experiencing except to get it swallowed! Its a big pill! I guessing that they are trying to find something that will do the less damage in the way of protecticting the liver and stomach and will go to another med if the Cellcept is not working but I would keep on the Dr for follow ups and info! Someone will correct me if Im wrong but its my understanding that the preference is to give you the least potent med, for lack of better wording. Because I thinkthey told me that once you have like the Cytoxum or Ritoxun, the effects it will have in the event of a relapse. Thus the Cellcept and periodic Ritoxun treatment for after the nearly a year on CYTOXUN!Also keep in mind, I believe the treatments are all somewhat different! We all have the same disease, they are just trying to figure out what works best for a disease for which there is no known cause or cure,but has to be dealt with!

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    Cellcept can sometimes be used for Remission induction or as an alternative to Imuran for remission maintenance.
    Mycophenolate mofetil for remission maintenance in the treatment of Wegener's granulomatosis - Langford - 2004 - Arthritis Care & Research - Wiley Online Library

    My mom did not do that well on Rtx, so she is on the Mofetil to try and reach remission.
    She couldn't tolerate the Imuran.
    However, she has MPA and not GPA.
    So far it is helping, but she had to lower the dose due to it causing her to throw up.
    It can cause diarrhea too.

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    Quote Originally Posted by bdawg212 View Post
    Has anyone been prescribed Cellcept for WG/GPA? It's supposed to be maintenance after remission is achieved, but my doc has prescribed it with high pred after Rituxan has failed to produce any results (so far). I'm not in remission, very high CRP and sed rate still. Curious about side effects.
    I'm one of the failure statistics. After 2 years on it, I went into a particularly nasty flare up. CRP and sed rate were off the charts. Sinuses were bloody and "angry", and my lungs had lesions again.

    I had very little/no side effects when on it.
    MikeG-2012

    "You never know how strong you are until being strong is the only choice you have"


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    Until this week, I was in remission (drug free) for a little over a year. For the past 3 weeks I've been dealing with sinus issues, and even longer than that experiencing the roving joint pain every now and again. I kept telling myself the sinus issues were due to an early allergy season but couldn't come up with a convincing excuse for the joint pain. During my last routine follow up (end of Feb.) with the rheumy, I mentioned the sinus issues, joint pains, and slight elevation in PR3 from my Jan. blood work. He wasn't too concerned until he noticed blood in my sinuses so sent me for another round of blood work. My PR3 increased a bit more, as well as an increase in sed rate and CRP....not drastic increases but a bit higher than they've been since I stopped all meds. Well, my doctor decided we'd better be safe and start back on prednisone for about 2 weeks and mycophenalate mofetil. I started them both and woke up the other morning with lower back pain which worsened as the day went on. I've never taken the mofetil (was previously on Aza as maintenance drug), so I'm attributing mofetil with the back pain. Has anyone experienced this problem?

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    I took it for a few years. Right now I have refused to take it for a little over a year. It is just it is a very potent chemical and I hate all the warnings about lymphoma and even with my insurance the amount I paid is horrendous. Also, when I went in the sun it didn't take long until I could actually feel the heat scalding me. If your doctor thinks it is a good plan then I would consider it. I hated being on it and I would tell my Rhuem that I wanted off and why do I have to be on this and he would say "because there is no drug for Wegs" My doctor is not happy with me that I stopped taking it but I currently have no signs of WGS, not on my labs or physically. I am still very sick but they do not know what that is. Could be residual WGs I suppose, after reading these posts for years we generally do not feel very well. Anyways, his argument now for me to take it is because the studies say that people who take cellcept in combination with rituxan achieve longer periods of remission. I read all the studies I could find and specifically for vasculitus there are a few about ctx and cellcept but I couldn't find one that convinced me to take the drug every day just in case I flare. If I do flare, I will go back on it and stay on it until all symptoms/labs diminish.

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