CIDP (chronic inflammatory demylinating polyneuropathy)

Posted by sherlock @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?

@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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@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?

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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.

Liked by Lisa Lucier

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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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@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?

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@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?

Liked by Lisa Lucier

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i dont know what those infusions are i live i rsa

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@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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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.

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@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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It’s chronic,inflammatory, demyelination, polyneuropathy.

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@harley22

It’s chronic,inflammatory, demyelination, polyneuropathy.

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It’s demyelinating not demyelination, spell check put it in wrong.

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@harley22

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.

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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.

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@harley22

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.

Jump to this post

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.

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@sherlock

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.

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Good advice, wondering if alcohol is also a no-no?

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