I have been taking plasma exchanges off and since 1996. Have had over 400 exchanges without problems. The procedure takes approximately 90-120 minutes depending on how many liters of albumin the exchange involves. Most doctors suggest a central line be used, however I was unable to have any long term success with them as all five of mine became infected despite the steril maintanance steps, heprin flushes, etc. The past two years plus, I have have my exchanges using vein punctures with 18 guage needles. Had them every three weeks, and veins are still in great shape. The Red Cross did all of my pp’s in a hospital out patient setting. As a side note, while the access line has to be in the annicubical (sp?), the return line can be a 22 gauge angio cath which can be put pretty much in any other vein which allows the access line to alternate arms. Nurses don’t like to do it, but it works fine.
Not everyone is as fortunate as I have been with their veins and have no choice but to go to to a central line. The Red Cross nurses have been telling me about a newer port the is placed under the skin and is accessed with a special needle. Being under the skin, the risk of infection is virtually eliminated. I do try to care for my veins to minimize scar tissue by putting ice packs on the puncture sites for 20-30 minutes at least 3-4 times before bed the day of the procedure. After that, I rub the puncture sites with either vitamin E cream or coco butter every day. My doctor is amazed that they can still use my veins and at the small amount of scar tissue. The Red Cross nurses are also surprised at the lack of scar tissue.
As far as the procedure itself, there is no pain (other than the needle sticks-I hate needles), but this can be eliminated by spraying the puncture site with Lidocaine spray just before the stick, or putting Lidocain cream on the puncture site about an hour prior to the procedure. The only side effect I had was during my very first exchange. My B/P dropped and I fainted. Since then no problems. I also take bata blockers to slow heart rate for cardio problems (seven stints) but the PP has no effects on heart or B/P, only the first time.
I have been on over a dozen treatment protocals over the years, and found plasma exchange to always be the most effective in stopping the progression. Frequency of the exchanges was based on the severity of the flare and ranged from daily to weekly, monthly, etc. The past two years I had been taking 100 grams of Gamunex (a glycine based ivig vs others which are glucose based) followed the next day by a 3 liter plasma exchange, then an iv infusion of 500 mg solumedrol. This combination worked very well for me. In December, my doctor and I decided to stop the plasma exchanges and Gamunex for a while to give my veins a rest, and switch to steriods. Currently getting 500 mg solumedrol iv 3 days in a row monthly. Mid month I take 4 days oral prednisone, 20 mg,and seem to be holding my own past three months.
Everyone responds differently to the various medications and treatment protocols, so you have to be your own patient advocate and work with your doctor to find the treatment that works best for you. Many of the treatments members posting have had success with, have not worked for me, so be persistent until you find what works for you. Keep up your spirits and stay after it.
🙂 Hi, I’ve been on Plamapherisis for the last 8 months and it’s helped me a great deal. I’ve never been on IVig, although my original Neuro wanted to start me on that treatment. Unfortuantely my heart rate was too slow, 48,52 beat per min. He had given orders that the infusion would have to stop if my heart rate dropped below 50bpm. In short, infusion was going to take 10hrs or longer. I had a pacemaker implanted and went for the 2hr Plasmapherisis as an out patient.
The original idea was to stay in-hospital for five days while IVig was taking place. Let me add what I feel is most important: approach that treatment in the most positive way possible. Never think that it’s not going to work. My experience is one of feeling very tired after treatment and others I’v spoken to say the same. After all they are pulling blood out of one arm and passing into another. Although there is never very much blood out of the body at one time, it is tiring. A few days later it kicks in and you feel much stronger all around. Let me add, if it helps, that I’m an old man, really old, so the affect of the treatment may be different for me. But I’ve spoken to younger people and they all say the same: they feel tired after treatment. Talk to the nurses. I’ve found them very knowledgeable and willing to explain the process. Doctors are only around if needed and then they say little.
All the best, I’m sure you’re going to be fine.
My thoughts and prayers go out to you and your family! I had a severe case of GBS, and those treating me didn’t even consider IVIG. You can be very confident in what you read here. This site was my wife’s only source of good information during my illness and I don’t know what we would have done without the help of those who help in this forum.
Keep the faith!