CIDP (Chronic Inflammatory Demyelinating Polyneuropathy)

I have been treated with IVIG for CIDP.

I have been diagnosed with demyelinating neuropathy in all four limbs. My neurologist tried me on all of the first tier pain relievers, and I was still hitting 9.5. Tried the IVIG and it was relief at first sight - my highs down to 7. My neurologist and I believe that it has slowed the progress of the disease.

@ericd47 I’m so glad the IVIG has worked for you! How often will you get the treatment? Are you on any steroids?

I receive the IVIG once a month for two consecutive days. I try to stay away from steroids. When I first started IVIG, I would get migraine headaches and my neurologist prescribed the steroids to tamp them down. Don’t need any longer.

has anyone tried vitamin b12 to repair damage to the myelin sheathing?

Hello @vicki127, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. I'm sure that Vitamin B12 is part of the puzzle, as well as Vitamin D and a few others. Here's some information that may help give you a better understanding of it's role.

-- Retardation of myelination due to dietary vitamin B12 deficiency: cranial MRI findings: https://pubmed.ncbi.nlm.nih.gov/9028851/
-- A vitamin supplement for remyelination: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4674287/
-- Supplements That Support the Myelin Sheath: https://www.livestrong.com/article/322041-supplements-that-support-the-myelin-sheath/
-- Analyzing the role of diet and exercise in myelin production: https://www.mayoclinic.org/medical-professionals/physical-medicine-rehabilitation/news/analyzing-the-role-of-diet-and-exercise-in-myelin-production/mac-20429394

Do you mind sharing what you were searching for when you found Connect?

Hello, I’ve never heard of CIDP what are the symptoms? I’m so sorry you have both CIDP and Polyneuropathy.

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?

@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/

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.