Originally Posted by Fran E

Hi, welcome and sorry to hear about your diagnosis. I have idiopathic peripheral polyneuropathy - sensory with demyelination and some axonal. They think it's autoimmune but don't know for sure. I was diagnosed about a year and a half ago, and have been having IVIG for about a year now. I go once a month for 2 days back to back. I used to get 50 grams over two days, now I get 100 grams over two days. It takes about 6 hours a day. I sit an armchair while the product drips by IV. IT is not painful or uncomfortable unless you don't like needles but is is time consuming. The main side effect you can get is head aches, I've had a mild one but it goes away with tylenol. I also feel flushed and hot afterwards for a few hours. But I go straight back to work as soon as it's done, no need to go home or lie down or anything. there is a small risk of blood clots and of course a risk when you receive any blood product of contamination, but the risk is low. does it help? I feel a little better afterwards, but the nerve conduction tests continue to show a decline, making it questionable whether it does help (hence we have now doubled the dose to see if it does help....). The other option for me was prednisone which I really really don't want to do.... so I continue to cross my fingers and hope this works because, besides for the time it takes, it really is not so bad. Whenever I go to the hospital for a treatment there are a number of others gettting IVIG - new folks and "regulars' like me. some have been on for years. It is very expensive (they say $75 a gram) so the decision to provide it is not made lightly. Hope this info helps. Good luck.