Reply To: plasma exchange

Hi Steven,
Just had my 500th plus plasma exchange today which is why I am on the computer at 3 in the morning. I get an infusion of 1000mg methyolprednisone after my exchanges, so I stay pretty wired for about 36 hours.

Had my first exchange back in 1996 (CIDP diagnosis in 1995, GBS in 85) after IVIG did not help and it was not a big deal. Sometimes, on the first exchange there can be a drop in blood pressure causing you to faint (which was me), but did not lasting effects and I walked out of the hospital about 30 minutes after the procedure was completed. The worst part about the exchanges is the time. If you have a port put in the time is shortened considerably.

About 2/3rds of my exchanges have be done using vein punctures (18 ga pharesis needles) in each arm. I use a numbing cream applied about an hour before the procedure and I seldom even feel the needles sticks, and I hate needles. Using this method it takes between 90-130 minutes to complete my 3 liter exchange. I don’t feel anything during the procedure and watch TV and talk to my nurse. The only problems I have had is an occasional flow problem when the needle doesn’t get set in the vein just right which sometimes requires a second stick. There have been a few times over the years when a vein has given up and blown out which hurts a little and usually swells. When this happens, they usually go to a smaller angio-cath needle (22ga) which allows them to use a much smaller vein as the return line. This causes a little anxiety(the 10 mg valium should be sufficient) but I have always been able to complete the procedures. I drive myself to the hospital and home after the exchanges with no difficulty. When I get home I do put ice packs on each puncture site, 20 minutes at a time every two hours to minimize any bruising.

I have had five perma-caths put in. These cut the exchange time down considerably, 70-75 minutes for me. My caths all had exposed lumens which had to be tended using sterile fields, mask, gloves, etc. and had to be flushed with heparin every week. Unfortunately, each got infected and had to be removed, which is why I am doing the vein punctures again.

Currently have exchanges every three weeks now but the number of exchanges is finally catching up with my veins in the form of scar tissue so I am now looking into the new ports which are implanted just like a pacemaker. Since they are under the skin with no external parts, infection is extremely rare. I have a post under Vortex ports as I was looking for some one having this type port to get there feedback.
I have also looked at the Power Port.

Hope this helps ease your concerns some. For me the reality is, plasma exchanges have always been my go to treatment when every thing else failed to help me when I have relapses. Pretty sure I have been on every CIDP treatment mentioned on this site and even tried three MS treatment protocols. Sorry to ramble, but feel I’ve been down the PE road much more than most and wanted to share my experiences.

Please remember everyone responds differently to the various treatments, so what works for one may not work for another. You and your doctor have to stay proactive and find what works best for you. Hope the PE helps you as much as it has me. Keep us posted.
Fred