Reply To: Your top signs that your CIDP is coming back/getting worse

April 1, 2017 at 7:36 pm


I read your link above. Let me quote it so I get it straight:

“IVIg stops your autoimmune system from making more bad antibodies, but does not remove the bad antibodies already released into your system, these can continue to do damage, especially the ones that have travelled deep within your system. Plasma Exchange (PE) removes the bad antibodies but does not stop your body from producing more. I think, depending on the severity of individual cases, that treatment should consist of 3 days of PE followed by 5 days of IVIg (or SCIg).

One of the best long-term treatments for chronic PN disorders is an immunosuppressant drug. These drugs help suppress the autoimmune system from producing bad antibodies over time. These are strong drugs and may have side affects for some. Prednisone, CellCept, and Rituximab are some of the more popular drugs being used.”

I think I understand your description above and it would make sense to include a treatment that removes the antibodies as well one that prevents more being made, as in IVIG.

So I’m on Prednisone. I was on it for month (December) at 60mg and my condition worsened that on Jan 2 I couldn’t walk and was admitted to the hospital for IVIG treatments, which really turned things around.

I felt like I peaked recovery wise in late February, at about 75% of my former self, but since early March I kept thinking I felt run down and I’m not progressing, and, in fact, regressing. Since January, I’ve been on 40mg of steroids a day. Numbness and weakness returned during the last two weeks and now I have 5 days of IVIG treatment starting Monday. I’m at the point where I’m about to reach for the cane again.

So, would you say the Prednisone failed for me in December and now, it failed again after my hospital stay in early January?

If so, what would be another immune suppressant that I could substitute for Prednisone?

At least to me, it doesn’t seem to be suppressing my immune system sufficiently, and I’d like to present my doctor with a argument for an alternative immune system treatment to replace the steroids. Your thoughts are greatly appreciated.


Bryan in Cincinnati