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Has anyone really gotten over CIDP?

Autoimmune Diseases | Last Active: May 20 11:48am | Replies (49)
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@slkanowitz

Harley have you had Rituxan infusions? It’s the next step in treatment when IVIG isn’t working. I’m in the Phoenix area. If you are too, I have a great neurologist here. I am starting Rituxan for the same reason. IVIG is keeping me barely walking around house with walker. but I am getting worse in spite of it. I do hope you can try the Rituxan. And steroids are possible as long as your BP is treated and stays in control. You might discuss both options with your neurologist. I wish you improvement and totally understand the frustration and quality of life decline.

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Replies to "Harley have you had Rituxan infusions? It’s the next step in treatment when IVIG isn’t working...."
kgitti | @kgitti | Apr 6 5:55pm

Please keep us informed about your experience with Rituxan as it progresses. That may be the next step for many of us.
And see my other post about the AN variant “autoimmune nodopathies“, really only defined in 2022. IVIG is much less successful with it and Rituxan appears more successful. https://academic.oup.com/brain/article/144/4/1043/6272065
I’m also curious about your insurance experience with the switch to Rituxan from IVIG.

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harley22 | @harley22 | Apr 7 2:34am

Thank you for your reply.
My Neuro here in Florida wanted me to start Rituximab infusions but my insurance wouldn’t cover them, and I had a 700.00 copay each infusion.
If I knew they would help me, I would pay out of pocket for them.
Right now I will be moving to Scottsdale AZ as soon as my house is ready.
It will be sometime between 7-8 mos maybe.
I’m in a quandary because do I start something here, or wait til I get to Scottsdale.
I will be needing a neurologist there, and I would gladly take any recommendations for one from you.
Thank you for your help!

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