Rituxan/Rituximab for long-term CIDP

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1

My wife has been dealing with CIDP and RSD/CRPS for 8.5 years; she was diagnosed with RSD/CRPS six years ago and CIDP 4 years ago.

She has tried numerous treatments - some of the treatments have been worse than the disease. She's one of the "lucky" ones who hasn't responded meaningfully to these treatments. She started 6 years ago with 5-day ketamine and lidocaine infusions, numerous nerve blocks (before CIDP diagnosis), steroids, IVIG, and currently biweekly plasmapheresis.

She's on more meds than you could shake a pharmacist at.

Along the way, she's tried acupuncture and Calmare, and looked into but didn't try transcranial magnetic stimulation (TMS). We're presently working on figuring out which meds can be reduced or eliminated, not a trivial undertaking; seems like for every med we take away, she needs two more...

We're assessing Rituxamab as a next significant step. Her primary neurologist suggested it, but we need to know more about whether it's worthwhile and weigh the risks against potential benefits. I've researched it and discussed it with several doctors, and the feedback I have received so far hasn't been overwhelming.

I am especially interested in learning about Rituxan for long-term CIDP.

2

I started Ritixin last summer. I use it every 6 months in combination with weekly IVIG (Gammagard) and daily immunosuppressants (CellCept). I’m 38. Diagnosed less than a year ago. I’ve stayed in a progressive state. But, with my current treatment I can walk, write, stay on my feet for some period of time. The pain and motor involvement have reduced tremendously, but nerve/muscle weakness continue. To have some relief of the pain is the greatest benefit. The Rituxin is helpful for me, but to each his own. Good luck.