what’s after cell-cept??

    • Anonymous
      December 11, 2006 at 9:46 am

      I’ve been off the boards for awhile. I came down with GBS in 98 and then it resolved into CIDP–pretty severe. I’m on IVIG monthly and take cell-cept dailly(among a whole bunch of other drugs).
      Anyway, what do people take after the cell-cept doesn’t work anymore??
      ps–anyone have the stem cell transplant done, if so, did it work??

    • Anonymous
      December 11, 2006 at 11:10 am


      As far as I know there has been 1 stem cell transplant in North America for CIDP.

      You can read her journal here: [url]http://www.caringbridge.org/il/jeno/[/url] (copy & paste)

      I’m not sure on your cellcept question.

      Take care,

    • Anonymous
      December 11, 2006 at 8:36 pm

      Hi Lisa,
      I am also on Cellcept, and not seeing any help with halting the rampage of CIDP through my body.
      My Neuro. told me he wanted me to be on it the full 6 months before he decides if I should go to the next step. Apparently, (he told me), that Cellcept takes a full 6 months before any actions can be seen…(and I am waiting…).
      BUT, he said the next steps get nasty. He said it goes into chemotherapy, with many side-effects, which is why he is hoping the Cellcept will do something.
      He mentioned interferon, etc.
      Let me know what your doctor puts you on, and if there are any side-effects, since I am following your route (lol).

    • Anonymous
      December 11, 2006 at 8:47 pm

      I am going on Immuran next month because they are afraid the double dose of IVIG I get monthly is bad for my kidneys. They are hoping Immuran will allow me to go back to a normal dose of IVIG. Is Immuran and option for you??


    • Anonymous
      December 11, 2006 at 11:43 pm

      You never stated what your current condition is, so I don’t really know how to answer your question. Are you walking? Do you have the use of your hands? The reason I ask is that the more drastic protocols are used only when one has a severe case of CIDP, & other, more traditional treatments have failed.

      I was never on Cell-cept, but I was on Imuran (another immunosuppressant), the same time I was on twice weekly IVIG & solumedrol (steroid) infusions. But keep in mind that my overall condition was very severe, as I was in a power chair full-time with little to no use of my hands. The Mayo in Rochester, where I had been an inpatient for 3 months had told me that there was nothing else they could try & that I would die within a year when the nerve damage went into my diaphragm & my lungs.

      It was at this point that my new neuro at the Uof MN recommended wiping out my entire immune system with the use of chemotherapy (cytoxan.) Jan-Sept of 2003 I received chemotherapy infusions at my local oncology unit, & finally the destruction of my nerves was permantly halted. Then I had to wait for my nerves to regenerate, which began about halfway through the treatments. Since the summer of 2004 I have been walking with AFOs & got most of the use of my hands back. I live a pretty normal life now.

      I really don’t understand why so many with CIDP are afraid of chemotherapy; cancer patients receive it every day. It has been wonderful not having to worry about any kind of treatments at all, & the only medicine I take is 1800 mg of neurontin daily, as my feet still have nerve damage. But as far as tolerating the treatments, it was a lot better than the 17 Plasmaphersis treatments I had in 2002, or tolerating the steroids & the damage they did. I was not sick at all during the 9 months I was on chemotherapy. But, as I stated before, this protocol is usually reserved for the more severe cases…

    • Anonymous
      December 12, 2006 at 3:44 am

      There are associated risks with all of our treatments. We have a disease that is quite difficult to eradicate. In fact it doesn’t go away. If you want it to go away it needs to be something severe like chemotherapy.

      Pam, you are quite a strong lady to endure your treatments, and build yourself back through your recovery. But that is just how strong you are. And I might add, what makes you such an inspiration to us all.

      Each treatment up the chain is a bit more severe, a bit more risky, a bit more touch and go, but the potential is also there for you. I am sure that your Doctor will explain it to you. If your Doctor does not take the time to explain the entire treatment to you, make him. You need to thoroughly understand a change in treatment. Your Doctor is the main person to give you the detailed information on your case.

      I did Imuran for about two and a half years. My CIDP is slowly progressive. I suppose it kept my CIDP continuing to be slowly progressive. It stayed slowly progressive. It never stopped, it never sped up, maybe it slowed down, but not too much.

      There are other treatment protocols. Your Doctor should be able to change your meds and attack your CIDP with any number of different treatment regimens. Talk with him/her.

      Good luck !!

      Dick S

    • Anonymous
      December 19, 2006 at 7:03 pm

      I guess I was wondering what was next after taking cell-cept, i.e., the next step in treating the cidp.
      thanks for the info on the stem cell transplant.

    • Anonymous
      December 19, 2006 at 11:10 pm

      Again, I ask what your condition is, because that can determine what treatments your neuro would be considering for you. I know many with CIDP who do well on just minimal dosages of steroids (prednisone), others do well with just IVIG every few months. If your disease is more progressive, then it has to be treated that way. If a person just has some numbness in his feet, obviously no neuro is going to put them through all of the treatments that I went through.

    • Anonymous
      May 22, 2007 at 7:21 am

      I did the the Chemo first then the cellcept I found the cellcept far better

    • Anonymous
      May 28, 2007 at 8:30 pm


      I personally have never been on cellcept. I have a severe case of the relapsing form of CIDP. My original treatment was IVIG, 5 days once a month. I kept declining so they tried plasma pheresis next, I did it for 11 days and was worse then when I started. Next we tried IV steroids and again not much of a response.

      Through 10 months of failed treatments I ended up as a complete quadrapalegic and had have a feeding tube and had to be trached and ventilated to survive. The next step for me was IV chemo called Cytoxan. I did very well and after 5 months of it I was able to feed myself again and on my road of recovery from my first major relapse.

      6 months later I declined again and had to go through the Cytoxan chemo again for about 2 months along with an IV med called Rituxan, this time it did not work for me. They put me on Cyclosporine and weekly IVIG infusions and this time the IVIG mysteriously started to work for me again with the help of the cyclosporine, once again I was on my road to recovery. After 6 months of the Cyclosporine, it started to make me very sick.

      Now I recieve IVIG weekly, and Imuran. Imuran taakes about 3 months to start working. I am proud to say that it has worked for me in an amazing way, I have been on this course of treatment for 11 months now and can finally say I feel better then I have in the past 4 years, I can walk unassisted for miles at a time and take care of myself and do my housework again.

      I hope this helps,


    • Anonymous
      May 29, 2007 at 1:50 pm

      I just wanted to add to an earlier question in the thread wondering why so many cidp patients are afraid of chemo. I am due to personal experience. My wife is a cancer survivor times 5 who has been in remission for 6+ years now. It is not given to cancer patients every day as a rule. It is given in the manner that best suits the needs of the patient. When my wife mentioned that traveling to the treatments all week long wouldn’t work, they gave her one large dose per week. I would venture to guess judging by her and her fellow patients’ accounts that it is tailored to the lifestyle of the patient and what they can tolerate. Although I have no firsthand experience with chemo for CIDP patients, I can imagine that would remain the case. No matter what a doctor advises, the patient’s input should drive the treatment and the manner in which it is given. In any case, should you receive chemo (or any other treatment for that matter), take charge of your own care and dictate terms as much as they will allow. It’s your body and your life.