sherlock
@sherlock
@sherlock
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Joined: Oct 31, 2018
CIDP (chronic inflammatory demylinating 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?
sherlock
@sherlock
@sherlock
Posts: 35
Joined: Oct 31, 2018
@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?
John, Volunteer Mentor
@johnbishop
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Lisa Lucier
@lisalucier
@lisalucier
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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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@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?
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
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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?
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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John, Volunteer Mentor
@johnbishop
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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?
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 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?
It’s chronic,inflammatory, demyelination, polyneuropathy.
It’s chronic,inflammatory, demyelination, polyneuropathy.
It’s demyelinating not demyelination, spell check put it in wrong.
sherlock
@sherlock
@sherlock
Posts: 35
Joined: Oct 31, 2018
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.
tjp4
@tjp4
@tjp4
Posts: 36
Joined: Feb 19, 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.
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.
helennicola
@helennicola
@helennicola
Posts: 214
Joined: May 27, 2019
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.
Good advice, wondering if alcohol is also a no-no?
@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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