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Plasmapheresis as a diagnostic for autoimmunity and as ongoing treatment

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by Jesse2233, May 15, 2017.

  1. Jesse2233

    Jesse2233 Senior Member

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    Summary: A procedure that filters blood and replaces plasma could bring immediate short term benefit on a regular basis, and help patients determine if their disease has an autoimmune component.

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    Plasmapheresis (in permutations of immunoadsorption, plasma exchange / PLEX, and apheresis) has been discussed sporadically here (usually in regards to Dr Carmen Scheibenbogen's ongoing research at the Charite in Germany).

    As far as I can tell only @Freddy, @BiancaS, @Shawn and @charles shepherd have tried plasmapheresis, and only on a limited basis. I believe @Shawn and @Freddy noted transitory benefit.

    It's been said that because plasmapheresis filters out antibodies and replaces them with healthy donor plasma, it could be a quick way to assess autoimmunity based on symptomatic improvement. You would be able to test for autoimmunity in cases with unknown or rare autoantibodies lacking readily available blood tests.

    If a patient knew that autoimmunity was the core cause of their disease, then they could more confidently pursue potentially risky treatment modalities like immunosuppression (i.e. Rituximab or Cyclophosphamide).

    A nice thing about it is that unlike most treatments, its effects are usually immediate. In other words, if you were a responder, you would feel better right away.

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    Plasmapheresis seems to be dismissed out of hand because it's expensive, invasive, produces temporary benefits, and many hospitals are reluctant to use it. Let's tackle each of these one by one.
    • Invasive. It involves removing blood from the body, filtering it to remove plasma, and reintroducing it with donor plasma. My understanding is that it has become much safer than it was in the past, and serious side effects (such as blood loss/clotting and calcium depletion) are rare with an experienced facility.

      The most common side effects are temporary reductions in blood pressure, sensations of coldness, and tiredness after the procedure.

      It takes 2-3 hours and can be administered via two IV lines or a central catheter and is generally done as an outpatient procedure.

    • Expensive. This is true. The cost is between $5-10k per session (1).

      However this is in line with the cost of autoimmune dose IVIG, which seems to be much more commonly used even though it has greater side effect potential and a longer time to produce benefit.

      If one had deep pockets / a willing hospital, was part of a research study, or found a comorbid condition that had insurance coverage, the expense would be less relevant. A one off treatment might be worth the cost alone to determine autoimmunity and thus indicate less expensive (though more risky) treatments.

    • Temporary benefits. Once the body begins reproducing autoantibodies disease symptoms would return. However there are autoimmune diseases such as Myasthenia Gravis that are treated with plasmapheresis on a monthly or biweekly basis. In certain cases this allows patients to lead normal lives. 2-3 hours of outpatient treatment once every 2-4 weeks for a productive life seems like a decent trade-off to me.

      Plasmapheresis can also potentiate the effectiveness of longer lasting autoimmune treatments such as IVIG or immunosuppression. For example, it's sometimes used in conjunction with these treatments in cases of Guillain-Barré or Limbic Encephalitis.

    • Reluctant hospitals. Because of the expense and traditionally limited range of treatment indications, hospitals appear reluctant to use it, even for those willing to pay.

      However there are hospitals in Germany, China, and Mexico that offer greater patient freedom at reduced cost. You of course want to find a reputable one.
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    Even with the caveats listed above, I'm surprised plasmapheresis isn't discussed and used more often by patients, doctors, hospitals, and researchers.

    I'm by no means an expert, and there are likely things I'm overlooking, so take what I say as a starting point for discussion and as a not definitive statement.
     
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  2. Sushi

    Sushi Senior Member Albuquerque

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    One thing you didn't mention that would concern if if this were an ongoing treatment, is the wear and tear on the veins. We need to be protective of our veins as they can be damaged by too many IVs.
     
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  3. Jesse2233

    Jesse2233 Senior Member

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    That's a good point. I'm not sure what the long term vascular effects are, but if it's through a central catheter perhaps the effects would be mitigated
     
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  4. Gingergrrl

    Gingergrrl Senior Member

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    I asked three Neuro's, a rheumy, plus both of my current doctors (last year) and was told an absolute non-negotiable "No" to plasmapheresis (PP). Every single one felt it was too high risk for me for multiple different reasons. I was more than willing to try it, and even try to figure out a way to pay for it, but I had no doctor willing to prescribe it (vs. both of my main doctors were 100% on board for me to do high dose IVIG the past ten months and are on board for me to try Ritux which is still pending insurance approval).

    I was told by all of these docs that PP is rarely done in the U.S. but is common in Europe and Asia. The hurdle for me was that I could not find a single doctor who felt comfortable with me trying it so I gave up. Now being a responder to IVIG, my entire focus is on Ritux (but I agree that it would interesting diagnostically to see how I'd respond to PP). I am not sure if the deepest hesitancy of the doctors was b/c of the severity of my MCAS (at that time) or another reason.
     
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  5. Jesse2233

    Jesse2233 Senior Member

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    @Gingergrrl that sounds like my experience so far as well. It confuses me as it seems to be routine for less serious conditions. What were their reasons for thinking it was too risky?
     
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  6. Gingergrrl

    Gingergrrl Senior Member

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    It was over a year ago but both of my main docs (who are amazing :love:) told me that they had never done PP on any patient and had no direct experience with it. They felt I could be allergic (at that time) to the anesthesia to install the port which they said was required. They felt I could be allergic to the solution that cleans the blood, to the albumin (hope this is the right word) and to various other components. And my MCAS doc actually felt it was high risk to get a blood-borne disease from the transfusion part and said it was much more dangerous than IVIG in his opinion.

    Both docs had a life-time of experience prescribing IVIG and my MCAS doc was close to 100% certain that I would not be allergic to the brand "Gamunex" and he was correct. They both felt that IVIG was the safer and better route for me to go. And the other doctors (the Neuros and the Rheumy) would not even consider it and said it just is not done in the US anymore. When everyone universally agreed that IVIG was the better route for me, I really didn't have a strong case against it, and was thrilled for the opportunity to try it, so I never asked about PP again b/c I knew the answer was no!
     
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  7. Jesse2233

    Jesse2233 Senior Member

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    Interesting, thanks for sharing that! I hadn't heard that PP has a higher risk for blood borne disease than IVIG, that's certainly good to be aware of
     
  8. Gingergrrl

    Gingergrrl Senior Member

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    I do not have any statistics or references for this but it was the opinion of my MCAS doctor about a year ago.
     
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  9. JollyRoger

    JollyRoger Senior Member

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    I wrote to Prof. Scheibenbogen because they made a study with ten participants.
    Prior to this study they found certain autoantibodies in 30% of CFS patients.
    But they used immunadsorption, not pp.
    3 of 10 positive tested patients responded positive to the treatment...... not so optimistic.

    I made the test and was tested positive for two of the antibodies but now I don't know the relevance of this antibodies.
     
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  10. Gingergrrl

    Gingergrrl Senior Member

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    @JollyRoger I wanted to clarify something (for my own knowledge) re: your response from Prof. Scheibenbogen. Did she say that prior to the study that only 3 of the 10 subjects were positive for the autoantibodies and then after the study, the SAME 3 of those 10 subjects responded to the treatment (or were the subjects who responded not necessarily the same ones who had the autoantibodies)? I hope this question makes sense and I will try to phrase it better if it doesn't!

    I did the test 2x and was positive for 7 of the 9 autoantibodies both times which sort of surprised me but at the same time, I kind of expected it.
     
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  11. JollyRoger

    JollyRoger Senior Member

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    @Gingergrrl The study only included positive tested patients....
    So everyone had autoantibodies...

    But I don't know what "positive response" mean .... maybe everyone responded but their was a relapse because of a new production of these antibodies.

    Her email was not so informative; just this info
     
  12. Jesse2233

    Jesse2233 Senior Member

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    3/10 seems similar to be a similar ratio to the major RTX responders
     
  13. JollyRoger

    JollyRoger Senior Member

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    Was it not a 10/15 response in rituximab?
     
  14. Jesse2233

    Jesse2233 Senior Member

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    I'm talking about almost full remission
     
  15. JollyRoger

    JollyRoger Senior Member

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    Ah okay.... and what happened to the other seven patients?
    Was the damage already to severely to repair??
     
  16. Gingergrrl

    Gingergrrl Senior Member

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    Thanks for clarifying and I misunderstood your prior post. I had thought that everyone in her study had the autoantibodies from Cell Trend which you confirmed (although not sure if it was disclosed how many each patient had)?

    I am not sure what is meant by a "positive response" either but in general, the response from plasmapheresis (PP) is very short-lived. I have never had it but this is what I have consistently heard. Versus the response from IVIG can last 3-4 weeks or more and occasionally it leads to remission (but I do not believe that I will be so lucky). Thank you for sharing about your e-mail to Prof. Scheibenbogen.
     
  17. Jesse2233

    Jesse2233 Senior Member

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    Did your 2 year recovery from autoimmune myocarditis result from just one round of plasmapheresis or several?
     
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  18. BurnA

    BurnA Senior Member

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    In the other thread here it mentions plasmapheresis, is this a mistake or is it different. Sorry I am not sure the difference between pp and immunoadsorption.

    From other discussion threads on PR it seems it is not conclusive if any of these autoantibodies have anything to do with ME/CFS.
     
  19. JollyRoger

    JollyRoger Senior Member

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    @BurnA on page 3 of this thread they wrote that it was a mistake... plasmaphersis changes the whole blood plasma, immunoadsorption just filters the igg antibodies.

    @Jesse2233 One round of seven treatments over 2 weeks of immunadsorption
     
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  20. Jesse2233

    Jesse2233 Senior Member

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