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Thread: Mycophenolat (CellCept)

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    Default Mycophenolat (CellCept)

    Anyone else nibbling on the immunosuppressive Mycophenolat Mofetil (CellCept)? No side effects but seems to be missing the punch I expected. Maybe it's a slow and steady treatment. Blood work is okay, but my ears are telling me otherwise. I refer to the ear activity as 'fluttering'. Overall very pleased with this round. Prednisone cleared up the eye, but 1000mg 2x is not doing it's work. Started drugs on 12/19/2013 for angry eye.. First flair since diagnosed in Jan 2011.
    Last edited by ballma02; 01-03-2014 at 11:28 AM.
    . . . we proceed on - Lewis and Clark journals

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    I have been on Cellcept for my Wegener's induced kidney transplant as one of my antirejection meds. The other anti rejection med I am on (Rapamune) I don't believe does much for the Wegener's. I was initially on Prednisone for several years after the transplant as well. Soooo, I've had Wegener's 14 years, transplanted 13 years and can say that I have not had any noticeable side effects from the Cellcept 750mg 2x daily. The Cellcept seemed to keep my Wegener's at bay for 12 of those years although now I realize that I probably was having small flares that went unaddressed until this past summer when the flare was too much for the Cellcept to handle. With my current flare, which I consider to be my first major one, I was put on 60 mg of Prednisone for 2 weeks, 40 for a month and now down to 30 for the month along with my first Rituximab infusion I have noticed that the Prednisone and Cellcept weren't enough to make me symptom free but did manage a lot of my inflammation and majority of pain. Our hope is that the 2 RTX infusions will put my system back to where it was and that the Cellcept will once again be enough to manage my Wegener's after I am weaned off of the Prednisone. I don't know how long you have been on the Cellcept but I do think that it needs to build up to a certain level in your system. There is a blood test that can be done to check your Mycophenalate Levels but I believe it is fairly new and doesn't mean a whole lot yet as it hasn't been around long enough to study what the results mean long term. My understanding of the Cellcept is that it targets your "T" Cells for immunosuppressive purposes where the Rituximab targets your "B" cells....

    Oh, by the way, welcome to the Forum! I grew up in Northwestern Illinois just over "The Cheddar Border" in the Apple River, Warren and Nora IL areas! Nice to have yet another Midwesterner on the site!
    Last edited by JenG; 01-03-2014 at 07:40 AM.

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    Thank you for the response. So much to learn from the knowledgeable 'A' team.
    . . . we proceed on - Lewis and Clark journals

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    Hi ballma02. I've had Wegener's (inc. renal failure) for 19 years and during this period have had a few fairly severe relapses. These relapses have responded well to a combination (among a few other drugs) or Prednisolone and azathioprine. I am currently going through a relapse that was quite a slow one, but has recently turned more aggressive and the pred+Aza is not working.
    The reason I give you that bit of background knowledge is because I think it's relevant to how you are at the moment. From what I have read and understand Mycophenolat is about as "powerfull" as Azathioprine. My ANCA test have been improving, but my relapse is DEFINITELY getting worse, so just because your blood work is okay, it does't mean your Wegener's activity is okay.
    It does sound like you a re wise in thinking that the mycophenolat isn't giving you the much needed punch and like myself it sounds like the big guns are going to be needed (ctx or rtx).
    I saw my renal specialist today and I'm booked in as an inpatient on Monday for 3 days. He's getting a rheumatologist involved this time and I expect I'll be on RTX for the first time (otherwise why waste an hospital bed for 3 days without receiving stronger treatment?)

    Hope things start to progress well for you.
    Diagnosed April 1995

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    Gilders, good luck with your hospital visit. May everything work out well for you.
    Cindy



    Earth is just a stopover and whatever you achieve there is only a small part of the deal. The Afterlife Of Billy Fingers


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    According to my Rheumatologist, I am a "Mychophenolate failure", because after 14 months, I had a relapse and a nasty flare up. My numbers were OK, but sinuses said differently, and were inflamed and a real mess. My ANCA and all other numbers were textbook, but sinuses were so bad I had months of debilitating migraine headaches.

    I had absolutely no side effects from the drug, so it was a nice one for me to take. Too bad it wasn't enough to keep the wegs at bay. After Rituxan treatments, I'm now on Azathioprine. Let's hope this one works!!

    So if I have any advise, it would be go with your gut feelings. If you think it isn't working, be adamant with your doctor. You, and you alone know your body's reaction.

    MikeG-2012

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