Starting Cellcept

    • Anonymous
      November 30, 2010 at 8:47 pm

      IViG works well, but I am hoping to lengthen the time between infusions and maybe get off them entirely. I was on prednisone for 18 months and that didn’t help and the side effects were not worth it for me.

      I hear that for a week or so, cellcept can cause nausea. I know I have to get blood tests done every month for a while. Any other issues to be ready for?

      Also, in the last 6 months or so I have been experiencing joint stiffness everywhere. Knees, hips, shoulders, back and neck and even fingers. Never know if its part of the CIDP or something else. Anyone else have this?

    • Anonymous
      November 30, 2010 at 9:26 pm

      There are a few side effects like you mentioned….nausea,diarrea, loss of hair, loss of apetite, tiredness, low white cells count…etc ….cellcept is like a little chemo on pills. I took it for over 10 yrs, plus prednisone and ivig every 2 weeks. the higher the dose ,worse side effects like any medicine.
      I couldnt take more than 2000mg but sometimes during relapses i got all the way to 3000mg which is usually the maximum you should take.
      There is a generic for it now, still a little expensive but not as much as the original.
      I couldnt take the 500mg tablets (it made me sick ), I had to take the 250mg capsules. a lot of them a day. It was easier for my body. Make sure you eat well even if you dont feel hungry.

      How much are you going to be taken?

    • Anonymous
      November 30, 2010 at 11:13 pm

      Thanks for the input.
      Starting on 250 2x a day. It says to take on empty stomach 1 hr before eating. I’m usually pretty tolerant of medicine and don’t get the side effects, but we’ll see.
      Any issues with getting colds, etc… as a result of the immunosupressant? Hasn’t been a problem for me with the IViG or the prednisone.
      Another venture into the unknown in search of the answer….

    • Anonymous
      December 1, 2010 at 1:28 pm

      Interesting timing.

      I just visited the neuro yesterday and I’m stopping Cellcept. I started at 2000 MG/day for several months, then when that wasn’t doing anything, we went up to 3000 MG/day for two more months. This was while weaning off IVIG.
      IVIG did work well for me at full dose (1gm per kilo every three weeks) but can’t stay on that forever if there are other options. Unfortunately I guess Cellcept isn’t that other option as I’m back where I started. Not that bad off but lost my good progress.

      Next step is to go back on full IVIG until I improve then try transitioning to something else for use long term or until I’m fixed.

      Hard to separate out what the side effects of Cellcept are. Seemed to be a little more tired but nothing definitive. No nausea at all. No illnesses or colds (or tumors) at all while on the drug. When I bumped it up to 3000 mg daily, I definitely had some digestive system issues. Bowel pattern was significantly different. No big deal but quite different. More gas and urgency.

      I also had one blood test where my RED blood cell count dropped (anemic). A follow-on blood test was normal. No drop in white count at all.
      My toes have been extremely cold this fall while on the higher dose but that might just be the CIDP kicking back in.

      In summary, Cellcept was kind of a non-event for me as far as side effects go… just didn’t work for my CIDP.

      I really hope it works for you. I think it is one of the best solutions out there if it works. We’re all different.

      Best of Luck


    • Anonymous
      December 1, 2010 at 3:05 pm

      I was also on Cellcept for about 4 months, while I was tapering off prednisone. I experienced no nausea, but I did become more susceptible to bruising. In fact, just leaning against a hard surface was enough to cause a bruise.


    • Anonymous
      December 1, 2010 at 6:46 pm

      I’ve been on Cellcept for 10 months.

      I was told it takes 6 months to “kick in,” so I did have a plasmapheresis treatment once every 4 weeks in the meantime.

      Now, all I take is Cellcept for my CIDP. No IVIG, plasmapheresis, or anything else.

      I don’t really think I’ve experienced any major side affects. Maybe diarrhea on occasion but that’s about it. No fatigue, weakness, or nausea. No drop in red or white blood cell count. No hair loss.

      Only had one blood test in the last 6 months. Not scheduled for another until at least March.

      I’m on 1500MG per day. 500 in morning and 1000 in evening.

      It has worked very well for me. The cost is just ridiculous, though.

    • Anonymous
      December 2, 2010 at 2:05 am

      It took 6-7 months for the Cellcept to take affect. I was wheelchair bound and even though I am still in a power chair, I can use a walker now short distances, I am much more independent. If I could get rid of the hand problems, I would be even happier. I did not have any problems w/ side affects. I was percribed this at the Mayo Clinic in Rochester, MN. I switched to Wayne State University in Detroit, MI as that is only three hours from me. Dr. Lewis has opted to keep me on it. Due to disasterous events in getting a dx, I am having severe trust issues w/ any doctor. I went to five Neuro’s before I decided on Dr. Lewis; however, I still do not feel completely secure. I really wonder if they “just don’t know enough”.

    • December 2, 2010 at 8:05 am


      As you’ve no doubt learned from the forum discussions, CIDP is not a “one size fits all” disorder. My experience with Cellcept did not go well. I did experience nausea, hair loss, and my CIDP symptoms worsened.

      I hope your experience goes well, but just be sure to listen to your body.


    • Anonymous
      December 17, 2010 at 1:08 am


      That is my worse side effect