← Return to CIDP (Chronic Inflammatory Demyelinating Polyneuropathy)

Discussion

CIDP (Chronic Inflammatory Demyelinating Polyneuropathy)

Autoimmune Diseases | Last Active: Oct 13 3:46pm | Replies (312)
Comment receiving replies
@scott22

Scott22 @scott22

I was diagnosed with CIDP and after testing the neurologist said that it’s idiopathic. For all of you that are having treatments were you diagnosed with a cause for your CIDP ? I don’t know what treatment the neurologist will recommend on June 4, 2024. So if you are getting treatment, what treatment and is it helping. Thank you, Scott22

Jump to this post

Replies to "Scott22 @Scott22 I was diagnosed with CIDP and after testing the neurologist said that it’s idiopathic...."
kgitti | @kgitti | Apr 14 11:15am

My CIDP was preceded by an odd virus, somewhat like a mild stomach virus. It produced daily, a form of migraines that were new to me for 6 weeks.
Following the migraines the CIDP peripheral neuropathy appeared.
I receive Hizentra SCIG and an occasional run of steroids. They keep it at bay.

VIEW AND REPLY
harley22 | @harley22 | Apr 15 11:05am

I was told that either my CIDP was autoimmune, genetic or caused by something like a virus.
That’s all I got.
Right now I’m seeing a new neurologist,probably my 7th one over the past 10 or more years,in a few weeks,in another state also,because I’ll be moving when my new home is built.
Right now I’m off Gabapentin, and the rest of the usual prescribed drugs that are given for this condition.
Nothing worked for me,even infusions of IVIG did not help.
I am considering Rituxan, a new infusion they want me to have, but my insurance won’t cover a lot of it, and I have a $700 copay per infusion,and I will need at least 6, maybe more.

VIEW AND REPLY