Advice on meds

    • Anonymous
      September 12, 2007 at 9:02 pm

      Hi everyone,
      My neuro has given me a choice of prednisone or cell cept to try. I know the side affects of pred.
      My 22 yr old son who has IgA nephropathy was on it last yr and now as to have both hips replaced. He is currently on low dose Cytoxan to suppress immune system to halt the progression of destruction on his kidneys.

      There is a family history of cataracts and retinal detachments and osteoporosis. I had a cataract removed from left eye when I was 29. My son had juvenile cataracts and we both have had retinal dt.

      Now we both have auto immune disorders….Do you guys think there is a link?

      I have also had IVIG treatments (10). It worked great the first session. Somewhat after that.

      Money is also an issue we have no insurance so paying by cash.
      The pred is cheap. Cellcept is not. Neuro is leanig to pred.

      I have been tossing this over and over in my head and just do not know what to do. It is either feel yucky bc of the CIDP or the meds.

      Has anyone just stopped doing anything? I am mentally and physically exhausted. I cry all the time.
      Thanks for any advice,

    • Anonymous
      September 12, 2007 at 11:20 pm


      Without insurance, cellcept is $800.00 for a 30 day supply of 500mg., here in
      Miami…it is expensive. However, I took prednisone and cellcept together and
      they kept putting me in the er. Cellcept’s original use is for anti-organ reject-
      ion by transplants – it is used in CIDP as a non-steroidal medicine.

      I stopped both myself, weaned off of prednisone, somewhat, alot quicker than
      told to, but stopped the cellcept after two months…cold. Neither worked for
      me. If you have a choice, use the prednisone – IF, a big IF, it is temporary,
      like 2-3 months only…that should stop your progression, but any longer and
      you might have side effects.

      I use IVIG now and nothing else.

      Good Luck…

      Miami Girl P/S All autoimmune problems run in families…cancer, shingles, RA, HIV, diabetes, etc.

    • Anonymous
      September 16, 2007 at 4:32 pm

      I’ve been on varying dosages of pred for 12 years now–as much as 60 every day, and usually 10 every other day. I have early stages of osteoporisis, despite the fact that I exercise 3-5 times a week. I’m also about 20 lbs overweight. But since nothing else works for me, I continue taking the pred. My neuro tried to ween me off the pred this spring, while I was getting IVIG, and I had a terrible relapse. So, for now I’ll take the pred and hope that once I’m post-menopausal there will be some good bone-building meds i can take.

    • Anonymous
      September 17, 2007 at 3:06 am

      I have not done IVIg, or taken any meds other than aspirin and b vitamins for the past year. I swung back and forth but never got worse until the past month. Now I am scheduled for IVIg again and I hope that kicks the CIDP to a functional range again. I think I must have a mild case or at least not progressive. I sympathize with your decision. I was not on cellcept long enough to know whether it helped or not but the prednisone did not help. My insurance company requires us to get refills filled via their company in Florida. Last year I ended up getting something like 5000 cellcept pills that have been sitting unused in my dresser drawer. I don’t know what the shelf life of those things is, probably a year, but it’s a darned shame that they went to waste. My husband’s insurance company is really good, I think we paid about $75 for all those pills. It’s such a shame that there is so much inequity in health insurance, I feel so badly that is costs so much money, I never knew it was that expensive!