CIDP followed by GBS

CIDP is the chronic form of GBS. Often times it can be put in remission with a combination of corticosteroids (Prednisone, etc) and IVIg/SCIg treatments. I used Prednisone and Plasma Exchange (PE) to put my CIDP in remission and, knock on wood, it has been in remission for 5 years now.

CIDP often attacks the Myelin (insulation surrounding the nerve Axons) so that nerve signals do not get through (short out). If the Myelin damage is not too severe, the body can rebuild it at the rate of approx 1 millimeter a day, which is only 0.0032808 ft, this is agonizingly slow but there has been little that can be done to speed up the process, except for the very expensive and experimental stem cell transplant treatment. In more extreme cases CIDP can attack the Axons directly, rendering them ineffective in transmitting nerve impulses.

The longer CIDP is allowed to be active in someone’s system, the more damage it can do. In my case I’m no longer able to walk and must use a wheelchair to get around. But I’m a worst case example because the IVIg did nothing to help stop the progression of my CIDP and by the time I started PE and Prednisone there was already too much nerve damage.

Prednisone basically shuts down the autoimmune system so it can no longer produce the CIDP cells that know how to attack “self”. This makes it more likely that treatments such as IVIg and PE can be effective. But Prednisone has many side affects for most people. In my case I got shingles, diabetes, a rare fungal infection, and cataracts (in addition to lesser ailments).

CIDP is a very complicated disease and affects everyone differently. Treating it quickly and putting it in remission are key components to the most successful recovery. Even after the most successful treatments, many folks report residual symptoms hanging around for years.

I hope your father recovers quickly and fully.

There is certainly a chance that he will get leg strength back, although it is not possible to say when or to what degree. He needs to stick with his treatment and be patient, and he must not overexert himself during his long (hoped-for) recovery. CIDP forces a lifestyle change. In my case, it forced me into early retirement, but I fortunately I was close anyway. If he is not, and must return to work as soon as he is able, then some accommodation for his condition must be made.

I have had CIDP on and off for four years but last winter I developed GBS probably caused by a bad case of shingles. I was never in need of a respirator and recovered enough to be able to walk with only a cane. Right now I can say I am again in remission with some dissability and receive daily Prednisone and IVIG every four weeks. Wish I could stop treatment but for the fear of relapsing.

angelast …. how do you develop GBS if you already have CIDP? I am confused. If you have been told that only “GBS” patients have respiratory failure, that is incorrect. You’ve only had CIDP, and something triggered a severe flare up.