CIDP (Chronic Inflammatory Demyelinating Polyneuropathy)
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?
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@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?
They help with energy and pain. I always know when it's time for my next infusions as pain increases. Is anyone having IVIG just for small fiber neuropathy?
Hi @sherlock — @tab4025 was asking about infusions for CIDP in another discussion. I'm hoping @tab4025 will be able to share their experience with you.
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
I am brand new to Mayo Clinic Connect. I did several searches. I tried CIDP; spelling it out; spelling it out with P being Polyradiculaneuropathy–that's my diagnosis, but I don't know what it means. Can anyone help?
Hello @melody2sulp, welcome to Mayo Clinic Connect. Here's some information about Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) from the National Organization of Rare Disorders.
You mentioned you have been diagnosed with CIDP. Did your doctors suggest or start a treatment plan for you?
i dont know what those infusions are i live i rsa
Hello @rowland, welcome to Mayo Clinic Connect. Do you mean the IVIG infusions discussed here?
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.
It’s chronic,inflammatory, demyelination, polyneuropathy.