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CALLING ALL CELLCEPT USERS

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Posted 8/19/2007 7:52 PM (GMT 0)
Hi everyone!

I've been wondering what I could use instead of prednisone just cause I don't want to be on prednisone for the rest of my life and we all know what the long term effects are and they are not good.  My doc mentioned cellcept to me before and I'm just wondering if there is anyone in here who has been on prednisone and got off of it and is now using cellcept.  Wondering how it has been for you and how your lupus was and is doing now.  Also if you are just using cellcept period could you just let me know how you like it, and what side effects you have,if any, etc.??  Thanks sooo much.  I appreciate your time and care.

Posted 8/19/2007 8:08 PM (GMT 0)
Good question. I was just put on both prednisone and cellcept. My doctor said good things about cellcept. The only thing he said that is bad is that you just can't absolutely get pregnant on it. His exact words were "you'll have babies with five tails and three eyes." Other than that he said that the only major side effect is diarrhea. I've been on cellcept for three days now and I haven't really got any diarrhea. Hope this helps. I'm looking forward to more answers too.
Posted 8/19/2007 11:20 PM (GMT 0)
sariah, I'm glad you asked this. I would eventually like to get off of prednisone too. It seemed that a while ago most people were put on methotrexate, but lately I hear more and more about Cellcept and I keep hearing a lot of good things about it. I read that it used to pretty much be used with success to treat lupus nephritis, but now theumies are finding that it helps relieve symptoms for a lot of lupus patients who don't have nephritis. Melissa, I'm glad you mentioned the thing about pregnancy. It stinks that some many of these meds we use to control lupus are so toxic and would be harmful during pregnancy.
Posted 8/20/2007 12:56 AM (GMT 0)
hey all,
i've been on cellcept since april '06, they put me on it after my transplant. that is a good question because i already have avascular necrosis in both knees becuase of the prednisone, but for me i dont think that it will be possible from the way my docs talk, they say that i will stay on the pred indefinitely, but as for the cellcept it is actually working two ways for me, they are using it for the lupus and as an anti-rejection for my new kidney. and i already talked to the docs and i can switch over to immuran when they say that it is ok for us to start trying to have a baby. as for the side effects the only main one i have noticed is diarrhea, but it did not come right away, it actually took a few months for the diarrhea to hit, but if it gets too bad there is another medication called myfortic that is the same as cellcept, it is just absorbed in your intestines instead of your stomach like the cellcept is.
Posted 8/20/2007 1:11 AM (GMT 0)

Hi Sariah,

Like Suzanne, I had a kidney transplant in March of 06.  I had been on cellcept prior to the transplant for the auto immune disease, and had the bad diarrhea.  It also took a little bit for it to kick in.  I ended up having to go off of it.  After my transplant, they put me on Myfortic for anti-rejection, which they describe as another form of cellcept, again, just like Suzanne said, it's absorbed differently, and I've been able to tolerate that just fine.  Cellcept is a great drug if you can tolerate it, hope it works for you!  I'm fortunate enough that I haven't had to go back on the prednisone.  Keeping my fingers crossed.

Lori

Posted 8/20/2007 1:29 AM (GMT 0)
Other recent cellcept threads...

www.healingwell.com/community/default.aspx?f=29&m=889676


www.healingwell.com/community/default.aspx?f=29&m=884439
Posted 9/2/2007 8:06 PM (GMT 0)
Thank you all for your answers.  I hope I will be able to get off of prednisone.  I have been on it for 10 yrs. now, with the dosage moved up and down at different times.  My Doc always tries to taper me off of it, but everytime I get close-I get sick or something.  The closest I've gotten was two mg. than into the hospital I went.  I just found out from the threads that Lynn posted, that cellcept has helped others with their cognitive functions, which I feel like I'm forgetting things here and there.  confused   and I'm only 32 soooo I don't want that.  I never thought I'd say this, but I think I could try to put up with a little diarrhea.......we'll see.  The hair loss....I'm already losing hair.
Posted 9/3/2007 6:11 PM (GMT 0)
You are luckier than me. The cloest I've gotten was 5mg. Anything lower than that, RED FLAG!!!!!! I have been on cellcept for almost six months, and the recurring symptoms seem to get under control. I still have some occassional joint pains when the weather is humid, but it is bearable. I am also on Pred 10mg, and the rhumty attempts to taper it off eventually. I have been on Pred for 16 years now, and never be able to taper off at all Hopefully, my next new rhumty will follow the advice of my old rhumty and taper it off.
P. S. My body seems to get pretty well with Cellcept. I did have some diarrhea when first taking it, but later it's fine. I have lost a bit hair, but it's okay, at least not patches of hair or all of them (I lost all hair when taking Imuran).
Posted 9/4/2007 1:02 AM (GMT 0)
Isn't it weird how differently we respond to the same drugs? Unlike Omega, Imuran did not affect my hair at all - it also didn't help me. Cellcept is thinning my hair a bit and changing it's texture -- and helping my cognitive dysfunction immensely!!!
Posted 9/15/2008 5:15 PM (GMT 0)
I have had LE nephritis for 30+ years. Was on Imuran, then switched to cell cept 6 yrs ago. I did well until this summer when the GI bug and diarrhea hit. I just switched to myfortic,but not sure if that will decrease the GI symptoms. Anyone have any suggestions or experience with Myfortic? I am awaiting a kidney transplant, so now is not the time to be having drug reactions. K
Posted 9/16/2008 3:23 AM (GMT 0)
I've been on the Myfortic 360mg, 2 pills twice a day and haven't had a problem with it at all.  I've been taking it since my transplant in March of 2006.  I haven't had any GI upset with it at all, like I did with the regular Cellcept (knock on wood!)  Good luck, I hear it really makes a difference with most people when it comes to the GI problems.

Posted 11/19/2010 12:29 AM (GMT 0)

I was diagnosed w/ SLE in June 2010 and started taking prednisone in June - still at 5 mg/d. Started on Cellcept after I developed a vasculitis in my index finger - lots of tissue damage under the nail but seems to be getting better. Started out at 1,000 mg/d Cellcept in August then after a while bumped up to 2,000 mg/day. Had major problems with dizzy spells at 2,000 mg/day so went down to 1,500 and that seems to have taken care of the dizzy episodes. So far, I've developed a major cold and a case of herpes while on cellcept - the exposure to the herpes remains unexplained and the test results inconclusive. Just got the flu shot and the pneumovax. Have had GI problems flare since starting on Cellcept. I don't like being on it but it beats having another flare.

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