December 2, 2007 at 12:06 am

I was never on Cell-cept myself, but there are other immunosuppressants out there that might work as well, such as Imuran which I know is generic. Ask your neuro if there is a major difference between the two?

Also, that is a very large dosage of prednisone to be taking. You cannot even begin to imagine what that will do to your body if you plan on staying on it. I would suggest instead seeing about getting solumedrol (methylprednisolone) infusions of up to 500 mg a week; it may be more expensive, but it is much easier on the stomach.

I was on weekly 1,000 mg of infused solumedrol for 21 months & ended up with cataract surgery for both eyes, an 80# weight gain (had never had any weight issues before), a rash all over my body which has left scarring to this day, not to mention the other obvious side effects of steroids, such as sleepliness, moodiness, hyperactivity, etc… I wish someone would have warned me back then what I would be in for. I did need the steroids at that time, however, just to stay out of a nursing home, but now they have realized that 500 mg works just as well as 1,000 or 1 gram.


April 12, 2007 at 5:54 pm

Hi Jack,

I’ve been on Cell-Cept 1000 twice a day since May ’04 when
Prednisone (C’EST COUP TERRIBLE), IVIG, did not help. PlasmaPheresis
arrested mine. Now I only take the Cell-Cept it makes my skin very dry. I do regular bloodwork. I haven’t had a cold or flu since I came
down with this lovely ‘present’. I pray something works out for you soon.


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…