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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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rowun4 | @rowun4 | Oct 2, 2023
In reply to @katrina123 "rowun4 I have common variable immune deficiency which is a primary immune disease. I had very..." + (show)
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rowun4
I have common variable immune deficiency which is a primary immune disease. I had very low IgG that caused me to have many severe infections throughout most of my life.
Before my insurance pays, the monthly cost of my daily infusions is over $17,000 dollars and not all insurance companies pay for this. I had to change insurance coverage because the insurance I had previously would have left me paying a few thousand a month. It might be a good idea to check and make sure that the insurance that you have would pay for it. Some insurance companies leave you paying for 20% which can end up being a lot of money.
Did your doctor give you an actual diagnosis? If you are able, maybe you should go back to your doctor and ask him if he can tell you a little more about your low IgG blood work. I am not familiar with Immunoglobulin being used for neuropathy so someone else on this site will have to inform you about that.
I hope that you can find something that will help you.

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He commented that I had the same diagnosis as you. I’ve been on antibiotics 3 times in 6 months. I developed pleural effusion(fluid in the lungs, and my pulmonologist saw air bubbles trapped in my lungs as well).

I’m so sorry for the fights you’ve had to go through to get what you need.

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gvincent100 | @gvincent100 | Oct 2, 2023

Hi, I had Methyll Predinose and had absolutely no reaction. I did 5 consecutive days of IVIg followed by two infusions the following week. . Then 2 consecutive days monthly for 3 months but found this knocked me around too much. I have changed to fortnightly and feel I am getting a good result from IVIg. My consultant has said that different people get different reactions. It is still early in my treatment but seeing positive results.

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jfn | @jfn | Oct 3, 2023
In reply to @rowun4 "What are CLT & shockwave? ( I swear I live in a wasteland when it comes..." + (show)
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What are CLT & shockwave?
( I swear I live in a wasteland when it comes to medical care). I’ll try finding it, but expect to hit some really crazy info.
Thanks!!!

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@rowun4
Hi, Cold Laser Therapy was used for carpal tunnel and like other things is used for neuropathy. The laser should stimulate cell/ nerve growth in theory. It worked for me. Shock wave therapy is another way of stimulating cellular growth. My neuropathy flairs when my food allergies have a really bad day (think food poisoning etc... These treatments calm my neuropathy to where they were before. So, I can recover with one less outstanding issue.
JFN

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jfn | @jfn | Oct 3, 2023
In reply to @rowun4 "I’m not sure why I’m here. I do have PN, but I recently saw an allergist/immunologist..." + (show)
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I’m not sure why I’m here. I do have PN, but I recently saw an allergist/immunologist & he brought up this as a treatment. But he didn’t say much about it beyond it was an infusion that might help. Blood tests showed abnormalities, low in more than one area of IgG.
I guess I’m curious about when the treatment is used: what conditions it treats. Things like that. I don’t expect a response, but I don’t trust just surfing the internet for medical advice .

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@rowun4
Hi,

IVig treatment can take many forms. I have it once a month, (as slow as possible) for several reasons to include low levels of IGg. The low IGg means we do not have the antibodies to fight off the different diseases of the outside world. They are replaced with the IVig treatment, sometimes one or two treatments is enough. My chemotherapy caused many issues and most of my doctors are working on them.

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mjmarshall | @mjmarshall | Oct 3, 2023
In reply to @suetex "Thank you, Harley22 for that common sense testimonial. I finished my 5 days a couple of..." + (show)
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Thank you, Harley22 for that common sense testimonial. I finished my 5 days a couple of weeks ago with no noticible improvement. Now I know to not give up. (Not that giving up was really an option.) Also, I would like to ask a question: Are there any PN's out there without the usual numbness/pain complex? Just balance problems? My lack of symptoms has made it difficult to be diagnosed. Additional input would be helpful.

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I have numbness but fortunately no pain. My axons are deteriorating … not sure if that is why I have no pain.

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suetex | @suetex | Oct 3, 2023
In reply to @mjmarshall "I have numbness but fortunately no pain. My axons are deteriorating … not sure if that..." + (show)
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I have numbness but fortunately no pain. My axons are deteriorating … not sure if that is why I have no pain.

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But your balance is ok?

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mjmarshall | @mjmarshall | Oct 3, 2023
In reply to @suetex "But your balance is ok?" + (show)
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But your balance is ok?

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Horrible balance without my AFOs. At this point I have lost all use of my toes on both feet.

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harley22 | @harley22 | Oct 4, 2023
In reply to @mjmarshall "Horrible balance without my AFOs. At this point I have lost all use of my toes..." + (show)
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Horrible balance without my AFOs. At this point I have lost all use of my toes on both feet.

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Me also, very bad balance issues.
Cannot even bend into lower cabinets to reach things without falling over.
Cannot feel my feet and toes on both.

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suetex | @suetex | Oct 4, 2023
In reply to @mjmarshall "Horrible balance without my AFOs. At this point I have lost all use of my toes..." + (show)
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Horrible balance without my AFOs. At this point I have lost all use of my toes on both feet.

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Tell me more about your AFOs. How do they seem to help and how did you get them. Assume I am completly ignorant. (Not much of an assumption.)

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suetex | @suetex | Oct 4, 2023
In reply to @gvincent100 "Hi, I had Methyll Predinose and had absolutely no reaction. I did 5 consecutive days of..." + (show)
Profile picture for gvincent100 @gvincent100

Hi, I had Methyll Predinose and had absolutely no reaction. I did 5 consecutive days of IVIg followed by two infusions the following week. . Then 2 consecutive days monthly for 3 months but found this knocked me around too much. I have changed to fortnightly and feel I am getting a good result from IVIg. My consultant has said that different people get different reactions. It is still early in my treatment but seeing positive results.

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Can you tell us what conditions you are contending with? I am fighting low IgG and neuropathy caused by Sjogren's Symdrom (balance problems). I have had 5 in a row IvIgs with one every 3 weeks to follow.

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