IVIG Infusions

Posted by giarc60 @giarc60, Oct 11, 2018

Anyone had success with IVIG infusions for idiopathic neuropathy ?

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@loribmt

From my own experience with infusions, even the infusions at my home clinic, if I had a reaction I would need to call 911 if I felt the reaction was critical and needed emergency attention. Otherwise I would call my own doctor to let them know my experience.
If I was in the clinic at the time, that was another story. Then I was quickly treated with a med to counteract the negative reaction and everything was fine.
My husband is with me so he was also my back-up plan and checked on me frequently at home.
When you travel are you alone?
Do you often have reactions to your infusions?

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I already had chronic migraines before my infusions started for IVig. I also received the infusion at an infusion center, now at home. After my third infusion I thought Dante needed to add another circle. After the fourth it took me weeks to recover
I stated cranial sacral pt and that relieved so much of the pain.
I asked the nurse if it could be done as slow as the first time, so much better. The speed of delivery is set by your weight, and "the pharmacy says" so I asked for it to be slowed down regardless of what the pharmacy says I can tolerate, my body was miserable so we need to find a solution. I also drink about 100 ounces of water and other things, no or very little caffeine, the day before, the day of, and the day after. My headaches have been reduced drastically working with the health care providers that listen. I have neuropathy, for which I do not have a specific diagnosis as I did not want to go through the testing. I have been taking Metanx ( had to stop due to astronomical vit b levels,) and used cold laser therapy and it was very much under control, I had to stop the Metanx and the neuropathy
is back but not horrendous. I do not know if would be as bad as it was before I started ivig. After all the misery having the IVig has helped me so much. I saw my friend the other day and she thought I no longer looked like 'death warmed over,' so yet another bonus!

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I would love to know more about the infusions especially someone that has a pacemaker.

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@jeanallen

I would love to know more about the infusions especially someone that has a pacemaker.

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What are your non pacemaker related questios?

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I've been getting IvIg infusions for over two years. I was diagnosed with ideopathic PN for many years, and finally Mayo said it was likely CIDP and recommended IvIg. It's been very helpful. Because the progression was over 30 years, we didn't expect dramatic improvement, but there has been some improvement. Without it, I'd be headed for a wheelchair. The only times I've had adverse reactions was when the infusion was within days of a Covid vaccine or booster, so the lesson there is: don't do them too close together.

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@jfn

What are your non pacemaker related questios?

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I have Atrial Fib take Coumadin.I have
had this for years.My heart had to be shocked the last time I was n the hospital.
Most nights I can't sleep because of terrible pain , tingling, numbness in my feet,legs due to neurophy.Any suggestions of treatment would be greatly appreciated.

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@jeanallen

I have Atrial Fib take Coumadin.I have
had this for years.My heart had to be shocked the last time I was n the hospital.
Most nights I can't sleep because of terrible pain , tingling, numbness in my feet,legs due to neurophy.Any suggestions of treatment would be greatly appreciated.

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Have you tried any complementary or integrative therapies to see if they might help with the neuropathy pain in your feet and legs? The Foundation for Peripheral Neuropathy has some suggestions that others have found helpful here – https://www.foundationforpn.org/treatments/

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Hello
Is anyone on this site recently? I was diagnosed with SNF polyneuropathy. I am in terrible pain and very dizzy. Pregabin is not helping me. An anyone give re ent feedback on IvIg infusion therapy.

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@jeanallen

I have Atrial Fib take Coumadin.I have
had this for years.My heart had to be shocked the last time I was n the hospital.
Most nights I can't sleep because of terrible pain , tingling, numbness in my feet,legs due to neurophy.Any suggestions of treatment would be greatly appreciated.

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There are so many treatments, and it is what works for you. I truly hate writing that. I have used cold laser therapy and Metanx. Both are said to improve cell growth. The cold laser is an approved therapy of the FDA. I also use a cerave lotion with hyrolonic acid every night before I attempt to sleep, I also use a lavender lotion, for calmness. One of the many benefits of IVig is it reduces inflammation and I am on that too. I feel better. Now, if I could win the battle with fatigue…. The best thing though is doing the happy feet yoga video, I do as much as I can as I start and end my day with a smile!

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@edva1943

I've been getting IvIg infusions for over two years. I was diagnosed with ideopathic PN for many years, and finally Mayo said it was likely CIDP and recommended IvIg. It's been very helpful. Because the progression was over 30 years, we didn't expect dramatic improvement, but there has been some improvement. Without it, I'd be headed for a wheelchair. The only times I've had adverse reactions was when the infusion was within days of a Covid vaccine or booster, so the lesson there is: don't do them too close together.

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Hi – I’m curious how one can test for CIPD? For my idiopathic neuropathy, my original doc and Duke said “most likely” a post infection but negative for Guillain-Barre (my sudden onset of PN was accompanied by UTI and kidney infection 5 yrs ago). They wanted to watch and see how I progressed, but I moved away after a few years. However, current doctor in new place says IVIG can’t be done because “we don’t know for sure”.
For a host of other reasons, I pray to be re-assigned to another Neurologist in our system soon (well I’ll have a new one in or out of current system either way) – I’d like to have good questions for him about exploring CIPD and the possibility of IVIG providing benefit. Thanks for any thoughts, and good luck with treatment!

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@dbeshears1

Hi – I’m curious how one can test for CIPD? For my idiopathic neuropathy, my original doc and Duke said “most likely” a post infection but negative for Guillain-Barre (my sudden onset of PN was accompanied by UTI and kidney infection 5 yrs ago). They wanted to watch and see how I progressed, but I moved away after a few years. However, current doctor in new place says IVIG can’t be done because “we don’t know for sure”.
For a host of other reasons, I pray to be re-assigned to another Neurologist in our system soon (well I’ll have a new one in or out of current system either way) – I’d like to have good questions for him about exploring CIPD and the possibility of IVIG providing benefit. Thanks for any thoughts, and good luck with treatment!

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My recommendation to anyone in your situation is to go to Mayo.
There is no test for CIDP, and there are other disorders with similar symptoms so it is difficult to diagnose. A nerve biopsy is helpful, but has risks. I had been going to Hopkins for years, seeing one of the top guys in the field, and had two biopsies, and he continued to classify it as ideopathic, while suggesting CIDP as a possibility. It was only when I went to Mayo that they were fairly certain — maybe 90% After I responded to IvIg, they were 99% certain.
But everyone's situation is different. And yours sounds quite different than mine, with sudden onset and other things happening at the same time. Good luck to you.

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