Bad Day

    • Anonymous
      December 4, 2007 at 7:22 pm

      MD stated today that he thought the nerve damage I have is permenant. That I need to learn to start living with my disabilities. Start PT/OT tomorrow.
      That I’ll need to be on CellCelpt for life. [That some people even have to get divorced in order to get help to pay for the drug.] Which we may have to do.
      That my autoimmune system is attacking and destroying my perpheral nerve endings.
      And I’ll remain on Prednisone 80 mg for quite awhile.
      So, guess I feel a little down at present.
      Will start research in am on HMO’s that cover CellCept and take the MD’s I go to.
      How has anyone else handled these issues.

    • December 4, 2007 at 9:05 pm

      Do you take cell cept in conjunction with ivig? Our doctor was thinking of doing that for Kevin. (I am not going to incidentally ivig is working) Are you progressing? How long have you had cidp?
      Dawn Kevies mom

    • Anonymous
      December 4, 2007 at 10:31 pm

      I was in denile for so long when I was rediagnoised with CIDP. I still do not want to admit that I have a chronic illness but it is sinking in especially when I try to open jars or ublock the front door. Still can’t drive due to the muscle weakness in my hands. hopefully my dr will let me drive short distances the next time I go see him.
      You might want to ask your doctor about cheaper immuno suppresents (I take Imuran which comes in generic form). The patent for CellCept expires in 2009 if that is any consolation. My high dose of prednisone was 60 mg. In the past when my does was reduced below 20 mg I would start to feel weak so far so good so the Imuran must be kicking in (it usually takes 4-6 months to see any results).
      Good luck and hang in there

    • Anonymous
      December 4, 2007 at 11:35 pm

      Will speak with MD on Fri. about Alternatives.
      I’m also on Arava, MD may switch that one.
      Hope you get to drive. I’m not allowed to at present with no reflexes from knees to feet or elbows to hands.
      Have you been the PT/OT route?
      Are you still on Prednisone?
      Thanks for taking the time to reply.

    • Anonymous
      December 4, 2007 at 11:53 pm

      I went back & read most of your posts. First off I am concerned about the high dose of steroids that you are on, 80 mg per day? I’ve never heard of that large of a dose. It will wreak havock with your entire body. Did your neuro at least start you off with a 5 day loading dose of IVIG & wait to see what happened before putting you on so many meds? Why the Cell-cept so soon?
      In the almost 6 years I have had CIDP & been on this forum, I know only a few people who have been on this drug. Once dx did he start you on all of these at once? If so, how can one even tell which drug is working for you? I think you should find a new neuro who gives just IVIG a good chance to work, & also he should not be telling you at this point that your nerve destruction is permanent, it is way too early. I got most of what I got back starting 1 1/2 years after I initially was hit so hard by CIDP that I was in a power chair with no hand usage for that length of time…

    • Anonymous
      December 5, 2007 at 10:09 am

      I was diagnosed with Sjogren’s Syndrome five years a go and then MGUS, Fibro, and other diagnosis. I was disabled by these.
      I’ve been on Arava for the Sjogren’s for over a year.
      I’ve been on Prednisone in the past for Sjogren’s flares. I was off of Prednisone prior to this hitting.
      The MD’s have hit me with so many meds as my symptoms were climbing rapidly to my chest.
      My lab values and blood work show that my auto immune system is in complete overdrive and they are attempting to get it to calm down and stabilze and then can work on getting me off of Prednisone. Which I hope is soon, as it has so many side effects.
      Yes, I had a loading dose of IVIG and 7 days later he started me on the CellCept and increased my Prednisone from 60 mg to 80 mg.
      I have a Rheumatologist also working with the Neuro.
      It is encouraging to hear that even a year from now there may be improvement.
      What is your level of activity now?
      Thanks for your kind words and have a good day.

    • Anonymous
      December 5, 2007 at 2:12 pm

      right now I am on 10 mg of prednisone. hopefully my neuro will reduce that to 5 mg next week when I go to see him. when I was in the hospital, I did pt and ot. I was doing pt/ot up until my last hospital stay. due to money and insurance issues (they would pay for a total of 20 visits per calender yr–anything over that I had to pay out of pocket). I will start up ot/pt next year but to be honest I figure why pay someone to help me do exercises that I can do on my own (I do exercises 2-3x a day).

    • Anonymous
      December 5, 2007 at 6:43 pm

      It was explained to me by my neuro that most treatment protocol is a two pronged approach for CIDP. Many neuros use PP or IVIG in conjunction with Celcept, Imuran, methotrexate, etc. Because it is chronic and the use of IVIG longterm is not advisable they add the others. Every case is different though and yours is unique so whatever your Doctor is thinking, ask him or her to explain that thinking and go from there. Be well.

    • Anonymous
      December 5, 2007 at 10:21 pm


      did your neuro explain what he meant by ivig longterm not being advisable? except for the cost i have never heard of that. everything other than ivig or pp should be a last resort means cuz of the adverse side effects. take care. be well.

      gene gbs 8-99
      in numbers there is strength