CIDP new approach

Posted by ginger3344 @ginger3344, Jun 15 5:38pm

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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covidstinks2023 | @covidstinks2023 | Jun 15 7:14pm

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.....

kgitti | @kgitti | Jun 16 11:33am

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

ginger3344 | @ginger3344 | Jun 16 6:38pm

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!!

ginger3344 | @ginger3344 | Jun 16 6:40pm

In reply to @kgitti "If I may, could you be specific about your “great results”? And is your insurance covering..." + (show)

yes! my medicare covers it!

Becky, Volunteer Mentor | @becsbuddy | Jun 16 7:31pm

@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!

harley22 | @harley22 | Jun 17 11:05am

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

harley22 | @harley22 | Jun 17 11:09am

In reply to @ginger3344 "yes! my medicare covers it!" + (show)

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.