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Has anyone had IVIG Infusions for Neuropathy?

Posted by giarc60 @giarc60, Oct 11, 2018

Anyone had success with IVIG infusions for idiopathic neuropathy ?

Interested in more discussions like this? Go to the Neuropathy Support Group.

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anoyymous123 | @anoyymous123 | Sep 19, 2024

ARGENEX COMPANY APPROVED VYVGART HYTRULO FOR CIDP FREPLACES IVIG?

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artemis1886 | @artemis1886 | Sep 19, 2024
In reply to @anoyymous123 "VYVGART HYTRULO APPROVED BY FDA FOR CIDP" + (show)
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VYVGART HYTRULO APPROVED BY FDA FOR CIDP

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I am taking Panzyga. I am presided with Benadryl, prednisone and phenergran.
Phenergran is 25 mgs take one or two up to four times a day. I get nauseous really easy with stomach ulcers and nodules along with gastroparesis.
I normally drink 80 ounces of water a day sometimes more. I just need to know if I need additional water other than the normal 80 ounces of water I drink. Panzyga is relatively new it was released in 2021 for CIDP.

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artemis1886 | @artemis1886 | Sep 19, 2024

I am taking Panzyga. It was approved in 2021 for CIDP. It has no glucose in it. It is also used to treat multifocal motor neuropathy which I also have.

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bettina123 | @bettina123 | Sep 20, 2024
In reply to @arcticmark "I have rapidly progressing PN of short fiber, long fiber, motor and autonomic nerves but no..." + (show)
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I have rapidly progressing PN of short fiber, long fiber, motor and autonomic nerves but no abnormal autoimmune or inflammatory tests. Went from working around the world to being disabled in less than a year. Had to push my neurologist to prescribe it and then push him to help me appeal my insurance coverage, which he did reluctantly. When I exhausted the appeals I was taking wheelchairs through airports and it was looking like I would be using it much more frequently. I have had to self-fund and OMG what a difference. 40% of my symptoms (feet, legs, hands, face...) were gone in a week and it continues to get better. A friend with idiopathic short fiber neuropathy has gone on IVIG and eliminated 100% of her symptoms. There is a double blind trial out of MGH testing IVIG on idiopathic short fiber neuropathy. You can contact Dr. Oaklander at MGH for information, not sure when they will be recruiting.https://www.google.com/search..69i57j0.12978j0j4&sourceid=chrome&ie=UTF-8

IVIG is really restricted by all insurance companies and is being more restricted by the year. There are economic incentives for some doctors not to recommend it. I have been surprised how little there has been on this site about IVIG as it is the only thing I have seen in my research that can reverse many neuropathic symptoms.

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what please is IVIG

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solobeee1 | @solobeee1 | Sep 20, 2024

I get IVIG every other month to strengthen my immune system but it doesn’t do anything for my neuropathy.

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John, Volunteer Mentor | @johnbishop | Sep 20, 2024
In reply to @bettina123 "what please is IVIG" + (show)
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what please is IVIG

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"Intravenous immunoglobulin (IVIG) is a pooled antibody, and a biological agent used to manage various immunodeficiency states and a plethora of other conditions, including autoimmune, infectious, and inflammatory states."
-- Intravenous Immunoglobulin (IVIG) - StatPearls - NCBI
https://www.ncbi.nlm.nih.gov/books/NBK554446/

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artemis1886 | @artemis1886 | Sep 20, 2024
In reply to @solobeee1 "I get IVIG every other month to strengthen my immune system but it doesn’t do anything..." + (show)
Profile picture for solobeee1 @solobeee1

I get IVIG every other month to strengthen my immune system but it doesn’t do anything for my neuropathy.

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Which one are you taking and how long have you taken it? The pharmacist said 4-6 weeks but my doctor said six months. I am taking mine five days then if needed sooner to contact the pharmacist. The pharmacist said it needed to be taken every two days every month. The pharmacist said we will have to work with it to see how well it works. We are doing panzyga for CIDP and mmn- mulifocal motor neuropathy.

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solobeee1 | @solobeee1 | Sep 20, 2024

I’m taking a four hour infusion of IVIG every other month along with immunotherapy for a blood cancer. The treatment works but I haven’t felt any improvement of my neuropathy.

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bettyg81pain | @bettyg81pain | Sep 25, 2024
In reply to @shirleywaxman "I had my first infusion a week ago , I am slated for one a month..." + (show)
Profile picture for shirleywaxman @shirleywaxman

I had my first infusion a week ago , I am slated for one a month for 4 months,
It took 3 hours , so far nothing happening,
shirley

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Please keep us all posted! Sure hope it helps you!!

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jfn | @jfn | Sep 26, 2024
In reply to @solobeee1 "I’m taking a four hour infusion of IVIG every other month along with immunotherapy for a..." + (show)
Profile picture for solobeee1 @solobeee1

I’m taking a four hour infusion of IVIG every other month along with immunotherapy for a blood cancer. The treatment works but I haven’t felt any improvement of my neuropathy.

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Hi @solobeee1
What else do you do for your neuropathy? I would like to help, but do not wish to repeat what you are already doing?

How long have you had the Ivig treatment?

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