Please Educate Me On Plasmapheresis

    • June 28, 2017 at 12:19 am

      I am a CIDP patient with decline in effectiveness of IVIG over several months and steroids are causing me lots of issues. My Neurologist is starting to discuss plasmapheresis (PLEX). Lots of Google results and not so sure it’s the no big deal impression I initially got from the doc but we are going to discuss it further. In the meantime, please educate me:

      1.) What is involved beyond blood out, AntiBodies scrubbed, blood back in? Possibly followed by IVIG treatment.

      I’ve read 2-4 hours for a few days and I’ve read 2 weeks in a hospital?

      Inpatient vs outpatient?

      I’ve read IV line in each arm and I’ve read a line in shoulder and a line in groin?

      These may be extremes but is there a typical procedure?

      2.) Risks?

      3) Effectiveness?

      How often necessary to repeat?

      Does a lack of IVIG effectiveness predict a better or worse PLEX response or unrelated?

      How long before a response is seen?

      Is there a reason one should not do?

      4.) Side effects and recovery?

      Of course this discussion also assumes insurance would approve. It sounds expensive! What else should I be asking the doc?

      Thanks for any input.

    • GH
      June 28, 2017 at 2:03 am

      I had plasma xchange when IvIg seemed to be ineffective. I had nine exchanges over nearly a three-week period, administered through a Quinton catheter in my groin. My recovery began near the end of the procedures and I have had no relapse.

      1. It isn’t just scrubbing antibodies. The blood is separated in a centrifuge, and the plasma (which contains the antibodies) is removed. New plasma replaces it, hence “plasma exchange.”

      I was in hospital when I had it. A procedure was two to three hours every other day or two. It was painless and I slept through most of them. Just the one catheter in the groin for me, except that I also had a PICC line in one arm. The PICC line is for a different purpose.

      2. There is no medical procedure without risk. In my case there were no complications and I was in the ICU when it was started, so plenty of expert help nearby. Discuss with the doctor who would oversee the procedure, who likely would be someone other than your neurologist.

      3. Impossible to say whether the procedure was the reason for my recovery, but I did recover. I first had two loading doses of IvIg which failed to halt my decline, so I was switched to PE. As I wrote, every other day or two for nine procedures. I understand that five procedures is typical. I think more is better. I feel fortunate to have received nine. I started to recover after about seven.

      4. No side effects for me. Yes, it is expensive, but so is IvIg.

      There are no guarantees. Your results may vary.

    • June 29, 2017 at 10:21 pm

      IVIg never worked for me and I had maybe 30 in total. I then moved to PE for ~80 treatments in total. The cost to the insurance company is comparable to IVIg, but they have different criteria for PE medical necessity.

      Since the procedure removes a large amount of blood and plasma, you will need to have a line installed (a normal IV or PICC line is too small for the volume). Unlike the Quinton GH used, I had tunneled catheters installed in my neck; the tubes ran under my skin and out my chest, into an output port and a return port. I was awake but numbed (Novocain or something) when they made the incisions and pushed the tubes under my skin and out my chest.

      The installation procedure took about an hour in total. At the end of PE treatments, it will take about the same amount of time to remove it and stitch everything back up. Unlike an IV, these large catheters can stay in for a year or longer.

      Yes, there is an increased risk of infection if one does not take proper care of the PE “port”. I had absolutely no issues with any kind of infection with PE, and I had several ports over 2-3 years. Installation of a port is more invasive that an IV, but not during or after PE treatments. I had all sorts of complications with IVIg (cuts, bruises, infiltrations, swellings, etc) as a result of being poked with a needle by people (RN’s at a Center of Excellence!) who didn’t really care and often brute forced the needle because my veins were not always popping out for them. I hate IV’s because of this experience! I’d rather have a port!

      I was advised to not get the areas wet around the catheter. There is an increased risk of infection when wet. I could not take a shower with the catheter, sponge bath only. I had to replace the special bandage every week and clean the area with an alcohol-like solution to minimize infection, and flush the lines with Heparin. Many people rely solely on nurses to do this maintenance; I learned to do it myself because I didn’t want to have to go to the hospital every week just to get a bandage change.

      Sometimes my blood pressure was too low for PE and they gave me something to raise it (usually food and drink, rarely a medicine). The biggest change in my blood pressure occurs when I transition between lying and sitting. The PE process usually took ~3 hours in total (Plasmapheresis usually takes 1-2 hours because it doesn’t remove as much plasma, just a few bottles worth). I often slept during most of the treatment. At other times I ate (hamburgers, pizza, cookies, etc) while PE was actively being administered and I regularly had visitors. At the end of the treatments, I was always extremely exhausted. I would look at the bag of plasma they removed (you have to ask to see it because they hide it from you lol), it was initially very dark greenish yellow, and the volume appeared to be close to 3 liter-sized bottles of soda. After several weeks of treatments, the color was a little yellow, almost clear.

      Three days after my very first PE treatment I felt a reduction of numbness in my face. I knew then that PE was for me and I couldn’t wait to get more. In the beginning, it was given to me three times per week. Reduced to twice per week after a month or so, then once, then every other week for maybe six months. I never had any side affects from PE except tiredness. But I was recovered after a nights sleep.

      I believe I would be walking today had I been treated with PE at the onset instead of IVIg.

      Here are a couple good articles about PE:

    • July 8, 2017 at 2:58 pm

      Jim im GBS at ICU they put a port in my chest i got 13 transfusions to stop the effect of GBS, now im 8 mths after the first plasmapheresis, im going about 50% in my recuperation, now my neurologist is going to give me more transfusions to re-enforce my immune system, ill post what results and the prosedimients they did.
      yours sincerely
      xochitl cortes

    • September 14, 2017 at 8:14 pm

      cer100, My post under rituxin may answer some of your questions regarding plasma exchange. I’ve been doing PE since 1996 and have had over 400 exchanges, so I can probably answer about specifics I have experienced over the years. It has done very well for me over the years and I hope you have great success with it.

    • January 13, 2018 at 2:16 am

      Back to review replies in various PE posts and ask about how often many are getting plasma exchange?

      Had 5x over 10 days in-patient about 7-8 weeks ago. Good response starting after 3rd TX and also restarted IVIG after the last one. Great results for 4-5 weeks but now things have plummeted and I’m probably worse than before with walking, balance, falls, grasping, lifting, rising from sitting, weakness, etc. Thats with a cane or walker.

      Communicating with neuro but it doesnt sound like they have other patients receiving PE this frequently although from comments in thread, especially Jim and Gavol, it doesn’t seem that unusual either. My only real affect from PE was low clotting factors requiring a transfusion on off days.

      Every 4-6 weeks seems really inconvenient for 10 days in-patient, but so is this near disabled condition I’m at now. Hope there’s not a lot of insurance pushback. It has been really good so far.

    • January 28, 2018 at 10:57 pm
    • February 8, 2018 at 7:01 pm

      New to the forum here trying to educate myself on new, progressive treatments. After 4+yrs of IVIG and slowly getting worse CIDP (37 yrs old and functioning well), I wanted to try something new, so Plasma Exchange it was. I went in for the first of 5 consecutive treatments over the course of a week and a half. The first one was done 3 weeks after IVIG and I felt worse the next day. The second treatment followed 2 days later. The following day I was unable to walk, and about 80-90% of my body was severely numb. I could not get up without assistance and was a very downward trajectory following one of the best months I had had in several years. Needless to say, the PE had a strong adverse effect on me and 2 months later I still haven’t recovered. There must have been good things taken out of my system, which set me back. I hope to recover by increasng my IVIG dose to get back to “normal.”

    • GH
      February 8, 2018 at 11:35 pm

      kostaskavas, that’s odd, because I had no adverse reaction at all to plasma exchange. I wonder what causes that.