Help me decide….treatment

    • Anonymous
      July 17, 2007 at 2:48 am

      I am sitting in a hospital right now and dont know what to do next…Im getting PP now which works for about 3 weeks tops, then after that it is a slow decline into paralysis, extreme numbness with pain pins and needles (all peripheral..)

      I started with ivig in march, but all it did was stop the progression with very little improvement…

      Doctors want me to choose either cyclosporin, cellcept or immuran to start after plasma…

      Im thinking maybe since the plasma improves all my symptoms greatly, maybe the ivig will stabalize and maintain whatever improvement i get from the pp.

      does this sound stupid?

      I just want to make the right decision and would apreciate any input..

    • Anonymous
      July 17, 2007 at 5:24 am

      Jason,not stupid at all. There is a protocol for the management o CIDP which is IVIG, followed by plasma exhange high dose steroids or Imuran may be cobined with either of these. If there is inadequate control then treatment is changed to cyclosporin or cellcept. If al else fails some physicians use Rituxan which stabilised my CIDP. DocDavid

    • Anonymous
      July 17, 2007 at 7:56 am

      Doctors tell me that plasmapheresis will wash ivig out of my system so I was thinking of trying the ivig after the plasmapheresis instead of using any of the steroids or chemo meds. I guess i am more afraid of the damage those other drugs may cause to my body………….

    • Anonymous
      July 17, 2007 at 3:20 pm


      I think Doc meant that the protocol is either IVIg or PP. Probably first choice being IVIg and if IVIg isnt chosen then PP (or otherwise if IVIg is proven not to work). PP will wash IVIg out that is correct. I believe if the IVIg works, there is no reason to try PP, or visa versa. – I believe that is correct DocDavid and others with CIDP will know so much more than myself, but having spoken to many CIDPers on Imuran, I know it helps a great deal for them.

    • Anonymous
      July 17, 2007 at 10:18 pm

      I tried talking the doctors into going straight for the cytoxin but they strongly believe that I shouldn’t be so drastic yet…I decided to go with cellcept for now…maybe this is the one for me…

    • Anonymous
      July 17, 2007 at 11:15 pm


      I am the mother of a 3 year old with CIDP, being dx at 19 months but contracting 5-8 months of age.

      He took ivig for over a year but never went into remission. I know steriods are not for everyone but that is the only thing that has helped him. (iv steriods, called Solumedrol).

      He did 5 days in the hospital and now does 4 doses (every 6 hours at home)one day a week. Our neurologist swears he’s not on a large dose.

      If you have any questions, you can email me since I’m not on the forum alot.

      Good luck, Lori

    • Anonymous
      July 18, 2007 at 2:54 am

      Hi Jason,

      I have been on all of the immunosuppressants. Out of all of them I had most luck with the Imuran. The other ones made me sick to my stomach. I had to take Cytoxan to put my CIDP into remission. The pp did not really work for me, and I think it took the left over IVIG out of my system and I crashed and became worse. either. The steroids and the IVIG did not work very well for me either, and after 10 months of declining I ended up on a vent and a feeding tube and my last option was the Cytoxan. Other then the side effects of nausea and losing my hair, the Cytoxan did wonders for me. I would not jump on it as my first treatment option, but if it comes down to it, I would deffinitely take it again. I took me from a complete quadrapalegic to walking miles at a time unassissted.

      If you would ever like to talk private message me and I will send you my # or e-mail address.

      Take Care and I hope things get better for you,

    • Anonymous
      July 18, 2007 at 3:51 pm

      I started with IVIG and kept going down hill for another 3 to 4 months. All my friends had advice and wanted me to change treatments, but my neorologist advised staying the course. Things finally bottomed out and stayed that way for a number of months and then started to slowly improve. After more than 6 months, improvements went a bit faster (relative). I’m glad I stayed off steroids because of the side effects. IVIG does not nhelp with healing, only to stop further damage, as far as I know, there is nothing that facilitates healing of the nerves other than time.

      I hope that helps.