Plasma Exchange (PE)

    • Anonymous
      November 30, 2010 at 3:36 pm

      My mother has been diagnosed with CIPD but her Neurologist doesn’t seem to be well educated with the disease. She has tried IVIg and it worked well for awhile but now she is getting no results, she’s tried prednisone and that didn’t work (don’t remember why), and now she is trying the Plasma Exchange. She is getting 5 treatments (1 for the next 5 days) in a row, is this normal?

    • Anonymous
      November 30, 2010 at 6:20 pm

      Emily’s mom gave a great link to an article by Dr. Lewis.

      Here is the link to her thread:
      [url]http://www.gbs-cidp.org/forums/showthread.php?t=6727&highlight=lewis[/url]

      Here is the link to the site she gave:
      [url]http://emedicine.medscape.com/article/1172965-overview[/url]

      And, finally, although I suggest you read all the articles, here is what Dr. Lewis wrote regarding treatment and medications that seems to apply to your question:

      “Adult

      Based on body weight and size to determine plasma volume; commonly, patients undergo 3 plasma exchanges per wk for first 2 wk; after that, number and frequency of treatments determined by clinical response; response tends to last for 2-4 wk and must be repeated to sustain improvement; some patients require more frequent treatment; remission is uncommon if plasmapheresis is sole therapy”

      hmmm, look at the last part- remission is uncommon….
      that’s what I’ve been told about IVIG as the sole therapy.

      For convenience sake I looked up ‘remission’ and Wikipedia says: “Remission may refer to: Remission (medicine), the state of absence of disease activity in patients with a chronic illness,…

    • Anonymous
      November 30, 2010 at 10:17 pm

      It depends on the doctor. My doctor said that it was better to do it every other day, you get really tired from it and some side effects. Some do it as outpatient, my doctor prefered having me in the hospital the whole time….just in case.

      The first time I did 5 cycles every other day and it worked fine. (many years ago..)After that he gave me 7 cycles every other day. He said that 7 is the maximum and it worked well when my relapses were getting worse.

      Let us know how your mom does.

      Take care,

      Rossana

    • Anonymous
      December 1, 2010 at 12:30 am

      Five sessions of PE, one each day, is not common. More common is every other day (M, W, F, M, W or something similar). It can be done every day for 5 days—I have with no ill effect—but it depends on your overall health and tolerance for the process.

      Godspeed in getting your neurologist up to speed. Have him visit the Peripheral Nerve Society website and click on the Medical Professionals page. He should find a link to the PNS guidelines on CIDP.

      MarkEns

    • Anonymous
      December 1, 2010 at 8:41 pm

      I had thirteen plasma exchanges.

      Seven of them were over a fourteen day span (every other day) in the hospital and the next six were done on an outpatient basis (one every four weeks for six months).

      Plasma Exchange worked much better for me than IVIG. It was a pain in the butt to get “shanked” with a catheter (about the width of a McDonald’s straw) in the neck every four weeks but it sure beats the hell out of lying in bed because you’re unable to walk.

    • December 2, 2010 at 7:59 am

      Lralsten,

      PE protocols do vary with neurologists and blood centers.

      I initially had 5 PEs in 5 days. I experienced improvement within days afterwards and my improvement was dramatic in the next few weeks. I am now on 2 PEs every 6 weeks. I have the PEs on back to back Fridays. (The blood center doctor concurs with my neurologist that this protocol makes the most sense physiologically. PE filters the blood. Any filtering process removes only a percentage of the contaminants for each filtering, and especially so for antibodies in the body. The antibodies in the tissues take time to move through the system.)

      I was not hospitalized during the initial PEs. It was done as out patient at the Methodist Hospital Blood Center in Houston, Texas.

      I hope you mother’s experience goes as well as mine.

      Keep us informed of her progress and please continue to bring your questions to the folks here … there’s a wealth of experience, knowledge, wisdom and caring to be gained from our friends here.

      Gary

    • Anonymous
      March 20, 2012 at 7:48 am

      Thanks for share these post if a more interested just visit on my website.
      http://www.hospitalpricingspecialists.com/HospitalDataSources.html

Plasma Exchange (PE)

    • Anonymous
      November 30, 2010 at 3:30 pm

      My mother has been diagnosed with CIPD but her Neurologist doesn’t seem to be well educated with the disease. She has tried IVIg and it worked well for awhile but now she is getting no results, she’s tried prednisone and that didn’t work (don’t remember why), and now she is trying the Plasma Exchange. She is getting 5 treatments (1 for the next 5 days) in a row, is this normal?

    • Anonymous
      December 12, 2010 at 3:33 pm

      Hello, I’m very sorry to hear about your mother. I had five (one per day) treatments of IVIg, when those didn’t work, I had to have five treatments of plasma exchange and they didn’t make a difference either. This was in 2006, today I’m fully independent and almost back to normal. I had GBS with Miller Fisher.

    • Anonymous
      June 7, 2011 at 12:44 am

      Hello,

      One treatment a day for five days is not uncommon. It would be a good idea to find out how frequently the center does plasma exchange. If they do one or two every day, then they will be well-versed in the possible problems. If not, then write back and we can give you a list of things to watch out for.

      As for the treatment protocols the neurologist has used, they are completely in line with common practice. One thing you don’t mention is how long each of the protocols was followed. We might be able to comment more cogently if we knew.

      Godspeed in finding an effective treatment.
      MarkEns