Ditto what Aussie said!

See how the IVIG goes. If the insurance takes is away, then you can try the Cellcept or other. Personally I don't think they will take it away with your documented Dx. I receive IVIG for CVID and Autonomic/peripheral neuropathy and no problems for the last year of getting it. Of course CVID is a primary immune deficiency so easy to get, but know many people that receive it for neuropathy only without problem. Insurance has settled into the idea that this is a recognized treatment protocol for neuropathy...with success.

But at this point (9 months later) you should know whether the IVIG is helping your symptoms. If so, then push to keep it. Of course not so easy to gauge whether it is slowing or halting progression.

Hello en bloc,

I wonder if they will take it away as well? If the doctor does not dink with the diagnosis, it should fly. He said that he has other patients that Aetna is giving problems and it is only a matter of time for me. I know the IVIg helps my symptoms and I do better when on it, of couse I do not what happens when I am off of it at this point. But, it appears that it has not really helped the neuropathy that much. I believe that it would take a alot longer than 9 months for the IVIg to do anything with the neuropathy. If re-myelination is occuring and nerves are re-growing, this would be a slow process.

Do you have noticeable symptom reduction related to neuropathic pain due to IVIg?

Thanks,
N1

The last year I was getting the IVIG primarily for the immune deficiency. We just now started ramping up the dose for neuropathy, so too soon to tell about it helping. It will take me (due to past reactions to IVIG) about 6 months to get up to proper neuropathy...they want to proceed slowly.

Hello en bloc,

What would you say is a dose of IVIg that will help with Neuropathy for a 170lb male?

Thanks
N1

The dosing for neuropathy is 2gm/kg. So 170 lbs is approx 80 kg, so your dose should be in the neighborhood of 160 grams (this is usually split over 2-5 days).

hello en bloc,

I believe this is correct, I receive 80 grams per day over 2 days.
I will double check...

Thanks,
N1