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?

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Justin McClanahan, Moderator | @JustinMcClanahan | Jan 6, 2019

@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?

sherlock | @sherlock | Jan 6, 2019

In reply to @JustinMcClanahan "@sherlock, I see that you have met some of the members in the Anyone here dealing..." + (show)

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?

John, Volunteer Mentor | @johnbishop | Jan 6, 2019

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.

Lisa Lucier | @lisalucier | Jan 9, 2019

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

melody2sulp | @melody2sulp | Jan 26, 2019

In reply to @JustinMcClanahan "@sherlock, I see that you have met some of the members in the Anyone here dealing..." + (show)

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?

John, Volunteer Mentor | @johnbishop | Jan 26, 2019

In reply to @melody2sulp "I am brand new to Mayo Clinic Connect. I did several searches. I tried CIDP; spelling..." + (show)

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?

rowland | @rowland | Jan 26, 2019

i dont know what those infusions are i live i rsa

John, Volunteer Mentor | @johnbishop | Jan 26, 2019

In reply to @rowland "i dont know what those infusions are i live i rsa" + (show)

Hello @rowland, welcome to Mayo Clinic Connect. Do you mean the IVIG infusions discussed here?
https://connect.mayoclinic.org/discussion/ivig-infusions

harley22 | @harley22 | Nov 22, 2019

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.

harley22 | @harley22 | Nov 22, 2019

In reply to @melody2sulp "I am brand new to Mayo Clinic Connect. I did several searches. I tried CIDP; spelling..." + (show)

It’s chronic,inflammatory, demyelination, polyneuropathy.

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