IVIG and Cellcept

    • Anonymous
      August 11, 2009 at 5:08 pm

      I have read so much conflicting information regarding Cellcept. I receive IVIG every 2 weeks right now and it doesn’t seem to help alot. I am supposed to start Cellcept. I have filled the prescription but I am still hesitant to begin the treatment. Does anyone have any advice regarding Cellcept and management of this new treatment? I am so tired of hurting and being exhausted I am about ready to try anything. As I am sure most of you already know how that feels. I appreciate any advice anyone might have to offer.

      As much as we all try…this can be a very depressing disease since so much of it is out of our control. So, as I say to my kids constantly keep your chin up and keep thinking positive so it will help cosmicly. 🙂

    • Anonymous
      August 11, 2009 at 6:27 pm

      I know the feeling about putting it off. My daughter was prescribed it two years ago and I waited about a month before filling it. She has been on it for two years and the only problem she has had was stomache issues. She was just weaned off of it because there were no changes while on it. We were careful about being in the sun and had her checked each year by a dermatologist. Her blood counts were always fine. Good luck.

    • Anonymous
      August 12, 2009 at 2:08 pm

      Thank you for the encouragement. I guess we will just have to give it a try to see what happens!

    • August 16, 2009 at 3:36 pm

      I have been on cellcept for about 8 years now and have had no negative results from the medication. That along with plasma exchange and IV solumedrol kept me fairly stable for many years.

      At the end of 08, I began a pretty rapid decline, so my neuro agreed to add Gamunex (other IVIG products did not work for me in the past) to the treatment protocal. Wow, what a difference. Since the Gamunex was added, I have returned to a pretty much normal life. Have not regained much of the muscle strength I lost over the years, but my endurance lets me go like the energizer bunny. Six months ago I could not drive more than an hour at a time on a good day. Gamunex differs from other IVIG products in that it is processed with glycine rather than sucrose.

      Just got back from a 2600 mile road trip through 7 states over six days and never missed a beat. We are leaving for the Georgia coast on Thursday, so there is no question about the improvement I have experienced. I feel very fortunate to have a doctor who is not afraid to try different combinations of treatments until we find one that works.

      I see my neuro this week and we are going to talk about eliminating the cellcept and see if the Gamunex and PP can keep me stable. Currently I take 2000 mg cellcept daily and have PP with 500 mg IV solumedrol, then the next day I get 200 grams of Gamunex. I have been doing this every three weeks since Christmas with the objective being to stop the activity of the disease. After three months on this treatment protocal, the CIDP progression stopped and I began to see the improvements and they continue.

      I have been fighting this since 1996 (also had GBS in 1985), and was making modifications to our house for a wheelchair when Gamunex was added to my treatment. These have stopped and now my wife and I can travel as we had always planned to do when I retired, so don’t give up. Work with your doctor and ask about other treatment options, or combinations of treatments until you find the one that works for you. As everyone will tell you, not everyone responds the same to the various treatments, so be persistant. Keep fighting and good luck.

    • August 17, 2009 at 10:36 am

      Everyone is so different,
      We have no experience w/cell cept, as we only take ivig (gammaguard). I can tell you what was said at the symposium this past fall in Chicago. The dr.s concurred that Cell Cept was not beneficial and did not seem to help and in some actually caused central nervous system involvement. I believe my statement was also reitterated in notes taken by others at the symposium. You can view these notes by another member named With Hope that has medical experience unlike myself. on the other hand, GAvol has had good luck with it, so it cannot be r/o. what is your current treatment regimen regarding ivig?
      Dawn Kevies mom

    • Anonymous
      August 17, 2009 at 10:14 pm

      I used Cellcept(2000mg/day) for about 90 days and during that time went downhill about 20%. Discontinued it’s usage about three weeks ago and now have 10% of what I lost back. No more wobbly walk and still have some energy at night. Wow, I don’t know that my relapse was related to the Cellcept, but sure have my doubts do to the relative quick recovery. I am doing PE 2/week, for two weeks and then will concider other therapy options,

    • Anonymous
      August 21, 2009 at 3:17 am

      I receive[U] IVIG [/U]2 days every 4 weeks, I have CIDP and have been on it for about 5 years.

      I have also been on:
      [U]Cellcept[/U]: Two trials lasting about 8 months each. I could not keep my WBC count up enough to ever get passed 100mg/day.
      [U]Imuran[/U]: Tried for about a week. Got an ear infection and UTI within that first week. It was also murder on my stomach and I couldn’t ever get up to my full dose.
      Cyclosporine: Was on this about 5 weeks most recently (listed is the order in which we tried these drugs) and my WBC count dropped so low at the lowest dose that I had to stop it. Didn’t see any benefit from it in that time frame.

      Cellcept did help “a little”, however, not enough to spread out or d/c mu IVIG infusions as planned.

      Right now, I just continue with IVIG, and have been stable. No acute flares, a little limping on rare occasion and tingling in my legs and arms more frequently (several times a week- at least once a day).

      HTH some, not sure if I answered your question or not!

    • Anonymous
      August 24, 2009 at 3:05 pm

      I receive the Gamunex every two weeks right now. GAVol you are right about the difference of Gamunex. I used to get migraines from the other products until we realized that I was “reacting” to it. I have not been unable to take any of the pain meds. I have tried Lyrica, Gabentin, etc. They all make me so sick and I have three kids. So, I decided not to continue with that regime because I want to actually be a part of their lives instead of wondering around like a zombie. That means I live with the pain. The Gamunex seems to be doing okay. I didn’t think it was doing anything at all until I had an issue with my insurance and had to go out without for a little while. There isn’t much change but I think it is a little better. My neuro and I discussed the next step since I don’t seem to be getting better. It is really hard to know how to measure success with this crazy disease. We decided to try the cellcept but the very first time I took it, I spent the next two days with a migraine. Don’t really know if it was the cellcept or coincedence. Athough, I haven’t had a migraine in a long time. Sometimes I wonder if I should leave well enough alone since I seem to be somewhat maintaining.

      Thanks to everyone for their support and I appreciate any input.:)

    • Anonymous
      August 26, 2009 at 9:43 pm

      I say go for it. I have been on it for 2 1/2 years now. I would rather experience the side effects of about any medication than the effects of CIDP. Hit it hard. When I first started taking it my doc said it would take about 6 months to kick in fully, but it took about 8. It is definately not an overnight medication.

      I take Cellcept and do Plasmapheresis treatments. During my last appointment with my neurologist, he could not find any sign of my CIDP.