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sherlock
@sherlock

Posts: 34
Joined: Oct 31, 2018

CIDP (chronic inflammatory demylinating polyneuropathy)

Posted by @sherlock, Sun, Jan 6 8:27am

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?

REPLY

@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?

@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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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

@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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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?

@melody2sulp

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?

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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?

i dont know what those infusions are i live i rsa

@rowland

i dont know what those infusions are i live i rsa

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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

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