IVIG, stops working?

    • Anonymous
      January 19, 2007 at 3:24 pm

      Been on high dose IVIG since May 06, great initial response (nothing short of fantastic), but backsliding badly last couple of months. Anyone have similar issues?

      I don’t have traditional CIDP, but lack of another diagnosis gives me that diagnosis. I have autonomic problems in addition to polyneuropathy.

      I think plasmapheresis may be my next step?

    • Anonymous
      January 20, 2007 at 10:20 am

      Hi, Zip.

      If the doctors are sure it’s autoimmune, you might try corticosteroids. A lot of CIDPers find relief with Predisolone. But PP is also an option.

      Best wishes in the battle,


      PS: I’m another one for whom IVIg has stopped working.

    • Anonymous
      January 20, 2007 at 10:37 am

      Yes, I would try steroids as well, only because if they work, then there is a good chance that you do have CIDP. You could try PP, but from my experience & many others, usually if IVIG doesn’t work then PP doesn’t either, as you might have the progressive form. I finally had to resort to chemotherapy to arrest my CIDP. That was back in 2003 & I haven’t needed any further treatments, but it is an extreme protcol. Others have had luck with rituxan infusions. Use the Search option to finds past threads on this treatment.

    • January 20, 2007 at 11:27 am

      Yes, I had the same experience. The solution was to reduce the time between ivig. I started at every 8 weeks, then reduced to every 6 weeks, then when I started to backslide, reduced to every 4 weeks and finally wound up after a couple of years at every 3 weeks which kept me running for years with no back sliding.

    • Anonymous
      January 20, 2007 at 1:16 pm

      Well IVIG did work great (2 grams per kilo of bodyweight) every 4 weeks, but I’ve seen to build up resistance over the last few months.

      I’m very wary of steroids. Have to speak to docs (neuro and immuno) about alternative treatments including pp.

      As for chemo type of therapies (like cyclosporin) I think that will be reserved for the tail end of treatment (ie after prednisone or pp).

      Thanks for answers and be well!