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Thread: Plasma Pharesis... what should i expect?

  1. #1

    Plasma Pharesis... what should i expect?

    Hi TM friends,

    Apologies in advance: typing is difficult for me today.

    I was diagnosed in September with TM, hospitalized for 1 week on solumedrol, then continued prednisone taper (still on it, they had to increase it cause it wasn't working) and neurotin.

    I'm 2 weeks out of hospital and quickly declining. So my doctor's sending me back Tues for up to 2 weeks of plasma pharesis and IV Ig. Can anyone tell me what to expect?

    In addition to all the physical and mental effects, I'm also struggling with depression and my sense of reality. Is this part of the disease, the drugs, or just the overwhelming experience of TM?

    Thanks for sharing,
    Melanie

  2. #2
    Hi Melanie,

    I'm glad you have a doctor with an aggressive approach - plasmapheresis and IVIg is aggressive, but is very appropriate if you are getting worse. Good luck!

    I haven't had plasmapheresis myself but have seen others have it. Usually they need to put in a "catheter" into one of your large veins (often it is put in near your clavicle, sometimes on your arm). The procedure is kind of like dialysis that patients get for kidney failure. They essentially filter your blood through a machine that hopefully removes some of the "excess antibodies" that they think might be causing your autoimmune problem. Some people may have a drop in their blood pressure as their body tries to adjust to this process (it will take a few hours - you just lie in bed and rest/watch tv while it is going on), so you could feel a little lightheaded, headache etc... But this can be corrected. Before you get each treatment you will have your blood checked to make sure your fibrinogen level isn't too low - if it gets too low it can increase your risk for bleeding, but is easy to follow. Fibrinogen can go down when you get plasmapheresis, so that's why they check it. But most people don't have any pain, and it is pretty well tolerated.

    I really hope this works for you. Good luck and see if you can go to Magee Hospital Rehabilitation at Thomas Jefferson University for your rehab. They are a speciality center in spinal cord injury. Look into it! You deserve the best!

  3. #3
    hi hlh,

    thanks so much for shedding some light. i'll check out jefferson too.

    best,
    melanie

  4. #4
    Super Moderator Sue Pendleton's Avatar
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    And you'll probably get the chills as blood cools going through the filter before reentering the other arm. Blood centers know about this and keep blankets for movie watching near by.

    Magee is really highly rated and your doc is following the very latest on treating the TM itself. He probably attended this summer's symposium in Seattle on TM and other rare neuroimmunological disorders.
    Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

    Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

  5. #5
    My wife was recently treated for ADEM at Jeff and went to Magee for Reahb about 2 weeks ago. Sadly, she suffered a relapse earlier this week. Our doctors at Jeff were not interested in seeing her again. She was admitted to Penn last night. She will begin Plasma Pharesis tomorrow. We'll go back to Magee when she's ready, the people there are terrific. But, we'll never go back to Jeff.

    Magee Rehab Hospital - 5 Stars
    Jeff - zero Stars
    Penn - 5 Stars

    Good Luck!

  6. #6
    Thanks for all your feedback.

    Just got out of hospital Tuesday night; HAd the PP and IV Ig. Got the permacath surgery; had a terrible reaction to the ketamine, but all worked out. Had all the symptoms everyone mentioned, but a great PP team who managed them and made the appropriate alternations. I did have problems with my fabrinogens, so the treatment had to be extended a bit to accomodate it. Now I'm just waiting to see the effects. My doc said his goal is to have me better but not perfect in 3 months, and I'll probably follow up with monthly or bi-monthly IV Ig treatments from home.

    I highly recommend my doc, Dr. Schwartzmann. He's with Hahnamann. He is so proactive and won't give up until yr better. Dr. Kerr was his resident. Apparently, he's also one of the top RSD docs in the world. And he has a great sense of humor.

    Good luck to all!

    I started a networking group for TM patients in Philadelphia. It's just going to be a chance to meet, greet, make friends, and maybe share stories. You can find it on facebook:

    http://www.facebook.com/inbox/?ref=m...id=44446668472

    I'll do a separate post with this later.

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