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?
Hello, @sherlock – I also wanted to mention you may be interested in this thread on IVIG infusions (original post mentioned this in the context of idiopathic neuropathy) https://connect.mayoclinic.org/discussion/ivig-infusions
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Hello @melody2sulp, welcome to Mayo Clinic Connect. Here's some information about Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) from the National Organization of Rare Disorders.
https://rarediseases.org/rare-diseases/chronic-inflammatory-demyelinating-polyneuropathy/
You mentioned you have been diagnosed with CIDP. Did your doctors suggest or start a treatment plan for you?
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Hello @rowland, welcome to Mayo Clinic Connect. Do you mean the IVIG infusions discussed here?
https://connect.mayoclinic.org/discussion/ivig-infusions
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.
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.
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 have a rare autoimmune neuromuscular disease that was diagnosed six years ago. Right now I am only treated with Gabapentin. I also have multiple fractures in my spine due to osteoporosis. I am in severe pain with the constant neuropathy and pain in my back. I have been treated by a pain clinic with many procedures and pain killers. My question is: has anyone ever been treated with ketamine for pain and if so,did it work?
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@JustinMcClanahan
@sherlock, I see that you have met some of the members in the Anyone here dealing with peripheral neuropathy discussion, but have started one specifically on CIDP. I would like to invite @pammy922, @cwallen9, @mayor47, and @jazzy27, to this discussion as they have all mentioned CIDP in the past. I would also like to invite @angelarisstrom, who had IVIG treatments for Guillain-Barre syndrome which is closely related to CIDP.
@sherlock, how are the IVIG infusions helping?
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