March 23, 2011 at 4:47 am

I am assuming you are referring to plasma exchange? I had 17 of these treatments back in 2002, the first 5 while I was inpatient & the other 12 as outpatient. They can be grueling, but usually don’t last for more than a few hours. My worst problem was my blood pressure dropping dramatically toward the end. They were stopped for me, as they didn’t help me at all. I was also on solumedrol infusions for 21 months; helped very little. If one doesn’t respond well to IVIG, usually PE won’t help much either. That is why I resorted to the cyoxan infusions in 2003 to arrest my CIDP.


February 14, 2011 at 1:57 am

Many years ago when I was first diagnosed with CIDP, I had 17 plasmaphersis (PPh) treatments. They didn’t work for me – and I eventually got onto IVIG and that ‘worked’ – still does, kinda.
I knew nothing about CIDP or PPh and found myself in a room with the dialysis folks, a set of tubes (in/out for venous access) in my neck. It was overwhelming for me because I didn’t know enough then to ask the right questions. All new to me and no one really ‘explained’ anything before hand. For me, knowing ‘whut up doc?’ is biggie. Nurses are an excellent source of knowledge, a little visit and discussion with them before hand would have been great. I did learn that the dialysis folks were way ‘sicker’ than me and while I wish them all well, I’d rather have been in a different room. I believe the PPh theory is to remove the bad guys and your body will replace them with the good guys. I’ve read where PPh works for some and not for others.
Except for the tubes, install & remove – I just laid there and let the nurse and machine do the work ~ no problem. I don’t think the PPh did me any harm and was worth a try, although later I found out that IVIG should have been tried first. It sounds like you are no stranger to medical procedures and are doing your homework. With this weird disease its very hard to really know what’s best. Today, I would not be as intimidated. My best wishes to you.