Plasmapheresis Experiences

    • Anonymous
      June 8, 2010 at 2:32 am

      Rather than hijack another thread, I decided to start this one for jdunk’s benefit. This would be a good place to collect our experience with plasmapheresis.

      Rather than clog up the forum with repeated information, though, it might be a good idea to point to threads that already contain your story. For example, much of my experience is recounted in these threads: [URL/][/URL],
      [URL/][/URL], and
      [URL/][/URL]. As an update, I have now used PP for 4.5 years and I am down to 3 treatments every 6 weeks.

      I consider PP to be a very good option, with relatively few complications. It is considered quite invasive, but I think proper care can overcome that issue. For some, it alone seems to be sufficient, or nearly so; GaryO Houston comes to mind. For others, me included, a combination therapy (steroids and/or immunosuppressants) are needed to keep the treatment intervals realistic.


    • Anonymous
      June 10, 2010 at 6:08 pm

      This is from”Brain A Journal of Neurology- Immunotherapy for Guillain-Barré syndrome: a systematic review” dated March 2007.

      “…This synthesis of the results of all the randomized trials confirms that PE hastens recovery and shows that it also improves the outcome at 1 year without a significant effect on mortality or increase in adverse events…”

      Later on in the article- “…Safety results In three trials with altogether 556 participants comparing PE with supportive care, details of complications were available. The RRs of serious adverse events (severe infections, blood pressure instability, pulmonary embolus or cardiac arrhythmias) were not significantly greater in the treated than the untreated participants…”

      Finally, “…This systematic review not only confirms that PE hastens recovery from GBS and improves its long-term outcome in severely affected adult patients, but also provides the best quantitative estimates of these effects. In adult patients, the effect of IVIg is equivalent…”

    • June 10, 2010 at 6:59 pm

      I have had PP for about 3 years (180 times) and results good. However. I had two different fistulas, one in each arm, and an AV graft and all ultimately clogged off. Finally back to IVIG for the past 2 years. The difference for me: No more fistulas or lines, 1 day per month in local hospital instead of 5 days per month in hospital 45 miles away and I think I have slightly more strength.

      PP was good but for convenience I will go with IVIG every time.

      PP may be more effective for GBS but I have CIDP and IVIG is at least as effective for me, more convenient (5 minute drive compared to 1 hour 20 minutes one way up and down the mountain) and a lot less time.

    • June 10, 2010 at 11:06 pm

      I am treated with Plasma Pheresis (PP) alone. I began them at the end of July 2008 and my recovery was dramatic. My neuro wanted to try PP (or Plasma Exchange “PE”) 1st and see how it worked and go to IVIG when/if needed.

      So far PP is working well for me. I have two on back to back Fridays every 6 weeks.

      I remember early on seeing a chart of the different treatments: PP; IVIG; chemo. I guess that stem cell seems to be a fourth.

      What I’ve learned most from experiences of folks here on the Forum, the success of the various treatments are very individualistic. So please don’t let the neuro’s lock in on any treatment as [B][U]”the” [/U][/B]answer. Find what works for you. And keep trying until you do find one that works. Another thing I’ve learned is that you have to be your own advocate with most docs. So be pushy and don’t settle for anything less than what’s best for you.

      Sometimes I get the feeling we’re not much more than Guinea pigs to some of these docs. If you get that feeling don’t hesitate to fire them and move on to finding one who will work with you and for you.

      Best of luck …


    • Anonymous
      June 11, 2010 at 8:04 pm

      I ve tried them all over the years . IVIG,prednisone,cellcept, and PP. all in different doses.
      My experience with PP is great. Ive done it 5 times. 7 cycles everytime. almost 3 weeks in the hospital at the time. but it puts my CIDP in remmision for about a year. The rest of time I take the other meds on regular basis. Now Im trying the stem cell transplant. we ‘ll see how it works. People seems to be doing really good after receiving it.

      Like gary said,dont let the doctor lock you in one treatment. Do your research and try them all to see how they ll work for you. Everybody has different side effects and reactions to the meds.

      If you dont try them you will never know if it could have help you. I ve always been willing to try anything and I ask for it. Doctors (some) dont know everything that is out there. You have to inform them.

      Wish you the best,