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Old 05-14-2015, 08:56 PM #11
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IVIG is a big dose of IgG. Yet, when introducing it to the immune system with autoimmune activity it's seems to help modulate it and help it to function better. They really don't know why it works so well. This actually isn't uncommon for a medicine to work and they not know why. The use of Neurontin and other anti-seizure meds for neuropathic pain began as an accident of sorts. They just noticed that seizure patients receiving it start to have less pain. So they start using it for PN. They now know more about how it works but they didn't at the start.
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Old 05-15-2015, 08:25 PM #12
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If I ever get IVIG i sure hope it works. No other options really. And I got scared of prednisone after seeing a bunch of youtube vids about it. No thank you! My first neuro prescribed me 60mg daily! After doing my research I tossed the prescription out.
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Old 05-16-2015, 06:52 PM #13
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My IGG and IGM were both very high, and I was on IVIG. The IVIG was used to modulate the immune system in my case.
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Old 05-17-2015, 12:56 AM #14
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My IGG and IGM were both very high, and I was on IVIG. The IVIG was used to modulate the immune system in my case.
Good to know. My levels are on the higher end as well. How much did you improve?
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Old 05-17-2015, 02:49 PM #15
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With IVIG, plasmapherisis and rituxin it is believed the immune attack on my nerves was stopped.
I'm not 100% sure which one stopped it, or if it may have been the combination of them all. I did not "get better" or regain any lost nerves. I just stopped progressing, with the nerve damage staying in my lower legs/feet.
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Old 05-17-2015, 04:51 PM #16
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Quote:
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With IVIG, plasmapherisis and rituxin it is believed the immune attack on my nerves was stopped.
I'm not 100% sure which one stopped it, or if it may have been the combination of them all. I did not "get better" or regain any lost nerves. I just stopped progressing, with the nerve damage staying in my lower legs/feet.
Hi Northerngal, can I ask how you know that the attack had officially stopped? was it judged solely by the fact you felt it wasn't progressing?
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Old 05-17-2015, 06:05 PM #17
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Hi Northerngal, can I ask how you know that the attack had officially stopped? was it judged solely by the fact you felt it wasn't progressing?
I did not feel like I was progressing and the emg/ncv tests had stayed the same.
I'm still afraid that it one day might progress, but try not to worry or think about it unless it starts happening.
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Old 05-18-2015, 08:47 PM #18
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Seems IVIG is tough to get approved by insurance. How do people get approval for PN if its not CIDP or MMN? Those seem to be on the "approval" list for most insurance companies. Is there a workaround?
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Old 05-18-2015, 09:31 PM #19
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If you have a positive skin biopsy for SFN then getting authorization for IVIG is easier. Without it, it's very hard...unless you have other confirmed Dx.
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Old 05-18-2015, 09:31 PM #20
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Seems IVIG is tough to get approved by insurance. How do people get approval for PN if its not CIDP or MMN? Those seem to be on the "approval" list for most insurance companies. Is there a workaround?
I believe you would have to have some sort of diagnosis that involves the immune system. Even then, only certain ones are approved for IVIG. If your neuropathy is not caused by some sort of immune system malfunction then most likely the IVIG wouldn't make a difference.
When unsure some doctors like to try 3-4 rounds to see if it makes a difference. But to do this they need to give you a diagnosis that your insurance will cover.
If it's questionable that your neuropathy immune related then ask your Dr. Dx you with CIDP to get it covered.
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