[mafaun]

Hello, my mom has had CIDP for 6 years. She's no longer responsive to IVIg, rituxin, or prednisone. She feels that she will become quadriplegic shortly; she just keeps getting weaker. Where she lives, there are no neuromuscular specialists.

1. Does anyone know the long term prognosis of CIDP once treatments are no longer effective?

2. Has anyone tried any other combination of treatments that have been effective?

Any thoughts would be great. Thanks.

[ChaucerFan]

Originally Posted by mafaun

Hello, my mom has had CIDP for 6 years. She's no longer responsive to IVIg, rituxin, or prednisone. She feels that she will become quadriplegic shortly; she just keeps getting weaker. Where she lives, there are no neuromuscular specialists.

1. Does anyone know the long term prognosis of CIDP once treatments are no longer effective?

2. Has anyone tried any other combination of treatments that have been effective?

Any thoughts would be great. Thanks.

Hi, Mafaun. I'm just starting to investigate CIDP treatments because the specialist I consulted recently thinks that may be my form of PN. Has your mom tried "plasmapheresis (plasma exchange)"? It's one of the treatments listed on the CIDP web site of the National Institute of Neurological Disorders (a branch of the NIH). I think it was one of the treatments my doctor mentioned, though he doesn't want to do anything yet because the treatment is kind of "rigorous," and at present my symptoms aren't too bad (lucky me--at least, for now!).

[mafaun]

Originally Posted by ChaucerFan

Hi, Mafaun. I'm just starting to investigate CIDP treatments because the specialist I consulted recently thinks that may be my form of PN. Has your mom tried "plasmapheresis (plasma exchange)"? It's one of the treatments listed on the CIDP web site of the National Institute of Neurological Disorders (a branch of the NIH). I think it was one of the treatments my doctor mentioned, though he doesn't want to do anything yet because the treatment is kind of "rigorous," and at present my symptoms aren't too bad (lucky me--at least, for now!).

Thanks for responding.

I think plex is the next option for her, although she is fairly weak. We're worried that if the plex does not work, we don't know what will happen to her. She's already had CIDP for 7 years. Will she become quadriplegic? Or are there other options out there?

[ChaucerFan]

There have to be better answers somewhere. There's a very moving story on the Neuropathy Association Facebook page about someone whose CIDP was apparently cured with stem cell therapy--but that was even more aggressive and lengthy than plasma exchange, and I think it was only in clinical trial. I hope others on this site will weigh in, if they have any experience or insight about this.