Joanne,

I think it is a matter if IVIG is the right choice for your husband. It sounds like the neurologist who knows him best feels it is not. Your husband is 77 and I guess you have to decide what you feel is reasonable to subject him to.

IVIG is reserved for people who have no other options to remain functional and stay alive. Age likely does affect the doctor's decsion. It is somewhat 'rationed' for cases that will receive the most benefit. The younger you are the better the chances of getting it. The more motivated you are, the better the chances of getting it. The more inflammatory markers you have, the better your case is substantiated, the more likely you are to get it. There are no formal panels like there are for transplants, but it seems the medical/insurance system, kind of 'self limits' IVIG.

IVIG is not likely to be given for Alzheimers. Keep in mind that IVIG costs minimally, $96,000 per year, not counting loading dose. This is at the cost of roughly $8,000 per month x 12. Loading doses add an additional $32-40,000.

The insurance industry or medicare would be bankrupted if it paid this. There seems to be some kind of unspoken agreement of when it is used and paid for.

I do understand the issues with Alzheimers, both my grandmother and mother had it. I am high risk for it. That is not why I get IVIG. I get it because I have an extremely high ANA (antinuclear antibody titer) and a diagnosis of autoimmune disease. I have antibodies that are essentially eating away at various organs, among them the nervous system. I don't expect to keep it my entire life. I suspect at some point they will tell me I don't meet their criteria and the disease will run its course. My system is so compromised that the doctors are very reluctant to put me on the chemo like drugs to suppress my system for fear of me going downhill from side effects. Prednisone would zap my bones and I am still fairly young. That said, they may still add small amounts to supplement IVIG. I wish I didn't need this, and I wish there were other options.


My neuro, like your neuro, is extremely reluctant to prescribe IVIG, and does so only when there are no other options.

It is akin to a transplant in some ways....not every one who could benefit from one, gets one. It it one of those treatments that once started, when does it end? It is a 'heroic' effort to stop inflammation. I would consider it as serious as chemo. IVIG is a last resort. It isn't given for idiopathic neuropathy.

You are right. It is serious stuff. It is basically a blood transfusion every month, more or less. With all the concern that a blood transfusion brings.

Yes, one can get renal failure, that is why they do kidney function tests monthy. The older one is, the more likely it is that this will happen. It is a huge amount of protein.

Most neuropathy is slow moving....often small fiber. Your husband could get a SKIN biopsy for small fiber, but, in general, they simply give Cymbalta or Lyrica to help the pain.

Cymbalta is an antidepressant, but a different one than Effexor. Cymbalta is duloxetine which resembles Prozac (fluoxetine) and Effexor is venlaxafine? MrsD knows more about this. She is very knowledgeable about drugs. True some people can't take these drugs, me among them, but, I am not typical.

Lots of people do fine on these drugs and their neuropathy progresses slowly if at all.

IVIG is not used for pain. It is used to try to salvage function and even life.

If you don't get IVIG, it will still be fine. There are other medications to control pain of neuropathy.

From what your doctor says, it sounds like the neuropathy is not likely to affect his function or lifespan according to the doctor that knows him best.

I wish you and your husband all the best.