CIDP (Chronic Inflammatory Demyelinating Polyneuropathy)

Posted by sherlock @sherlock, Jan 6, 2019

I have been in treatment for CIDP going on 3 years. The treatment is IVIG infusions 2days a month. I also have small fiber neuropathy. I don't take any meds for this condition except CBD. CBD with lidocaine and some THC at bedtime. I can't take any of the first tier drugs like lyrica. Here's my question: Have any of you been treated for neuropathy with IVIG infusions?

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

slkanowitz | @slkanowitz | May 2 12:23pm

I was diagnosed with CIDP last summer but have had symptoms for several years. I am 74, female. I also have chronic EBV, small fiber neuropathy and had an acute exacerbation like Guillain Barre following a Covid infection last summer. The autoimmune process destroys the myelin sheath of peripheral nerves. It’s absolutely worthwhile being “tested” for it, although it’s really more of a clinical diagnosis. An EMG, certain neurological autoantibodies in serum and spinal tap can help in the diagnosis
. IVIG is very helpful for many. I’m on that plus steroids and immunosuppressants. Without the diagnosis, you won’t get treated accordingly. I wish you well! I think this condition is far more prevalent than reported, especially in women.