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Thread: Plasmapheresis

  1. #1
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    Default Plasmapheresis

    i apologize for misspelling????/


    anyone try it? results?

  2. #2
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    Default A Friend Did

    A friend of mine had to be on this treatment after being on Avonex to clean out her system before going on Tysabri.

    What else is it used for?

    Gabriella

  3. #3
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    Default

    I think it was an older treatment that was tried for MS at least in trial. Many things have been tried. It is now most assoc. w getting Ty out of the system in cases of PML.

    I could be wrong.
    ANN
    There comes a time when silence is betrayal.- MLK

  4. #4
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    Thumbs up

    Hello,

    I have been on plasmapheresis therapy since Oct. last year. In removing the plasma from my blood some of the antibodies are eliminated. After 3 weeks on the treatment I could walk faster, my legs were stronger, my bladder issues are better and my memory is better. I am doing it 2-3 times per week. I am taking advantage of my increased strength to work and stretch my muscles more. Nothing has worked for me including Avonex, Rebif, and Copaxone.

    The only issue I have with apheresis is that when I reduce the treatments per week my symptoms start to come back. So meanwhile we find something better to do, I will try to stay on this treatment.

    A downfall of this treatment is that it does not work with every patient. There are several MS patients that have had success with plasmapheresis but I am not sure how many have not. But to me it is worth the try.

    Peace,
    Adi

  5. #5
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    Default

    That was an interesting post from Adi. By the way, welcome to the board. In view of the results you have gotten, I am surprised that more people have not tried this.

    There must be a down side and risk - there always is! I am curious as to what the risk are. Can you tell us.

    Thanks,
    Virginia

  6. #6
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    Default

    My doctor has about 15 patients on plasmapheresis. There are patients with walking difficulty, cognitive issues, even ones with optic neuritis. They remain on the therapy because it has worked for them.

    Downsides and risks are:

    plasmapheresis is off label
    it is expensive, some insurances will not cover (although medicare does)
    allergic reactions
    you get two needles in your veins every treatment (but I have a catheter since I have bad veins)

    Here is a link that has good information about it:
    http://www.lifescript.com/Health/A-Z...apheresis.aspx

    Take care,
    Ady

  7. #7

    Default

    I am a plasmapheresis RN and have used this therapy for patients with MS. Yes, it can be effective in treating the symptoms but it is not something anyone would want to do longterm. In order to perform this therapy, blood has to be removed from the body and then sent through a centrifuge where the red blood cells and plasma are seperated. The red blood cells are then returned to the patient along with new plasma (blood product) or albumin (protein). The plasma that is removed contains the cells that attack the myelin sheath along with a bunch of other really important cellular components you need to stay healthy.
    The problem with this is that anytime you accces a person's blood system there is a huge risk of infection. Add to that the fact that you are removing the wbcs that protect you from infection, the risk is even bigger. Using a catheter is not an access you can use long term because of infections. Another problem is that the ACD which prevents the blood from clotting can also remove a patient's calcium which can cause a whole bunch of other issues. I have seen several allergic reactions which can be severe and life threatening. Sooooo, given all of these risks. I would say it is a good therapy if you are having a very bad attack but as a preventative treatment you really need to ask your self if it is worth it.

  8. #8
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    Default

    Thank you, Bruiser, and welcome to the forum.
    ANN
    There comes a time when silence is betrayal.- MLK

  9. #9

    Default

    Plasmapheresis has interested me because I have another disease, Polycythemia Vera, in which I have too many platelets (three times normal). I also have high red cells, but these are removed every 6 weeks or so with 300 units of a phlebotomy, which has made my iron stores low. My ferritin is only 4.4 and iron stores 32. My husband had said there must be some way to take out the blood and remove some of the platelets and put the blood back in.
    I found that there IS such a place in Santa Fe, where they remove platelets form healthy humans, who get paid for their platelets. The platelets are used for those who do not have enough. The people who donate can donate repeatedly, as at a blood bank.

    But my doctor brushed it off, saying it's just for "emergencies". I am always in a state of near-emergency, could have a stroke from a clot because of the high platelets, and I can't take the chemo which i tried 5 times this year (3 tries of various Interferons and 2 on Hydrea). I am going to try a very lose dose Hydrea which has to be manufactured at a Compounding Pharmacy. The other option is to go to Mayo Scottsdale and have p32, a radioactive [phosphorus, which knocked down the platelets and is said to have no side effects, but gives an increased chance of leukemia down the road (15%). The local hematologist does not like p32 because he says radiation caused bone fibrosis which is the "end stage" of my disease, which I am not near now.

    So thanks, Bruiser, for telling me of the difficulties of this procedure. I won't feel so envious of those who get it now. I would love to have a treatment which works for this Polycythemia Vera. Nothing good has been invented but some people live years on Interferon or Hydrea without bad effects.

  10. #10
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    Default

    thanks everyone

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