Connect
← 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
I have just finished my second round of IVIG infusions, and I don’t feel any relief in my neuropathy symptoms.
I will be having my third round ,middle of December, then I’ll get reassessed by my neurologist.
Has anyone felt any improvement, after their treatments?
I’m getting IVIG for CIDP.
Replies to "I have just finished my second round of IVIG infusions, and I don’t feel any relief..."
Hello, I do feel relief for about a week and by the time for my next infusion I'm so ready. I have had the initial week and 4 maintenance infusions. My doctor suspended the infusions because she thought there was an issue inhibiting my recovery. She referred me to a spine neurosurgeon and she was right. I have spinal damage and now will undergo a spianal myelogram to check how much damage there is. I'm sure I will go back on infusions after this issue is better diagnosed. Hang in because it can take weeks to months to feel better.
I was on IVIG for five years. Twice I was paralyzed from head to toe with CIDP. For the last 15 months of indusions I did not see any change in strength or pain. I also tried plasmapheresis and steroid infusion. I am baseline now. Walking with a walker. I have severe pain in my spine.
I finished round two last week. As I understand it, some do experience some relief. I think, though, that a more realistic goal is to slow or stop the progress, which is gauged by NCS tests; comparing "post treatment results" to baseline
My husband just finished 5 days, 3 hrs a day , of infusions. He wasn't feeling bad, just weak, before the treatments and now after the treatments feels the same as before the treatments.
Sadly, the IVIG it hasn't worked for me. This second relapse, the prednisone did not work either and my internist took me out of it, since my blood values were a mess. Now without any other treatment I am getting worse. has anybody tried Plasmapheresis?
I just finished my second IVIG treatment for multi-symptom SLE and small fiber neuropathy. I am having difficulty with the side effects , mainly debilitating migraine (6days), nausea and weakness. I have not had any positive results yet but understand it can take several months for any relief.
No relief and I get worse pain afterwards
Connect
I had 3 years of monthly treatments and didn't see improvement until after a year. I'm now in remission and just have pain associated with neuropathy. Diet is extremely important in controlling the symptoms. Eliminate sugar, dairy, gluten, red meat. Eat lots of greens, enjoy green smoothies, drink lots of water. Good luck.