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CIDP new approach

Posted by ginger3344 @ginger3344, Jun 15, 2024

CIDP
started 6 months ago with Rituximub (sp ??) Rituxin is manly for non- hodgkins lymphoma and its working pretty well.
After a year and 44 infusions of IVIG which helped a little for awhile, but it no longer got any better, I went to UCLA and got started on the above infusions with great results so far (6 months).
Any one else on this??

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debbiewave | @debbiewave | Sep 5, 2024
In reply to @ginger3344 "Getting feeling and mobility back in my legs, before if i walked or tried to build..." + (show)
@ginger3344

Getting feeling and mobility back in my legs, before if i walked or tried to build back muscle, the autoimmune thing would kick in and i would lose even more muscle.. The rituxan would keep that from happening. I get it every 3 months now and they say two years and it should hold with an injection every 6 months. I reported it to the CDC about june of 2021 and they never responded to my report or did anything about it!!

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That is so hopeful. My husband has yet to be given a diagnosis, and he collapsed 12/24/23. He can walk with pain and use of a stand-up walker. He has a phone appointment with Dr. Dai in Albuquerque finally on Sept 19th. We live in Las Cruces, NM and NO help from any neurologists. One did the nerve study and said it is hereditary and you just have to deal with it.
Found a doctor that is a nephrologist- not his field but he has been helping us to get a diagnosis. It has been a struggle..........

REPLY
margydolan | @margydolan | Feb 24 10:56pm

My husband has been diagnosed since 2014. For 10 year IVIG worked great but now he's had a terrible flare up (?) and is wheelchair bound and his hands no longer work. He start Rituximab in Nov/Dec and gets it every three months. It is not yet showing signs of working but docs (at Northwestern and Mayo) say to have more patience, and their hope is that it break through and he will have some improvement. Our lives have been completely turned upside down. My husband has just retired and has been in hospital, rehab and assisted living since Oct. 2024. We head to Mayo in Rochester March 3 for more tests and advice. I'm so encouragaed the Ritux is working for you!! How long did it take for you to see results. Many thanks for your post. Hoping and praying for you!

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