← Return to CIDP (Chronic Inflammatory Demyelinating Polyneuropathy)

Discussion

CIDP (Chronic Inflammatory Demyelinating Polyneuropathy)

Autoimmune Diseases | Last Active: 22 hours ago | Replies (261)
Comment receiving replies
@raphyboi

I've been getting IVIG infusions for 15 years. They worked well for slowing the progress of the disease. Starting in late 2020 they began to make the neuropathy worse for several days before getting better. Now it's much worse, 5 or 6 bad days then slow improvement until the next infusion 6 days later. My doctor is stumped. Any advice?

Jump to this post

Replies to "I've been getting IVIG infusions for 15 years. They worked well for slowing the progress of..."
Becky, Volunteer Mentor | @becsbuddy | Jul 6, 2021

@raphyboi Hello and welcome to Connect. We’re a group who share problems, information and helpful tips. We’re not doctors so we cant diagnose or prescribe medications. I’m going to ask a moderator to move your question to an already established group talking about CIDP. You’ll find other folks who may have the answers you’re looking for. Take some time and read through the discussion and get and give help!
I also have a chronic demyelinating disease but mine is in the brain. Ive been treated with steroids, monoclonal antibodies and chemotherapy. Still looking for the best treatment.
- CIDP (Chronic Inflammatory Demyelinating Polyneuropathy) https://connect.mayoclinic.org/discussion/cidp-chronic-inflammatory-demylinating-polyneuropathy/

VIEW AND REPLY
raphyboi | @raphyboi | Jul 6, 2021

Thanks for your reply. I had three plasma phoresus treatments and ended up in the hospital unable to move for two weeks back in 2007. Been on prednisone am on CellCept. Fear that I'm near the end of the road.

VIEW AND REPLY