Cidp new approach

Posted by ginger3344 @ginger3344, 6 days ago

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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My mother in law was on Rituxin for non-hodgkins lymphoma and it kept her in remission. I will say, it can make you very tired.

Praying for much you. Hugs & Hope.....

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If I may, could you be specific about your “great results”? And is your insurance covering it?

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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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@kgitti

If I may, could you be specific about your “great results”? And is your insurance covering it?

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yes! my medicare covers it!

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@ginger3344 I just restarted rituximab and it’s doing well so far. And Medicare covers the infusions. I get rituximab for my autoimmune disease called Clippers (lesions on my brain). Let’s all hope we get better!

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I also will be starting Rituxan infusions shortly.
Hope it helps my CIDP issues.
IVIG did not after 8 mos of infusions.

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@ginger3344

yes! my medicare covers it!

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I was denied coverage in state I live in and copays were horrendous.
I’m moving in few mos and my new neurologist said the Rituxan is covered in the new state I’m moving to.
I could’ve been done by now if I wasn’t denied in Florida.
Maybe my neurologist there didn’t try hard enough to get me approved there.

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@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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Hope it helps me because I can hardly walk some days.
My legs are so weak.

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was yours from the covid vaccine?

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