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Thread: PLASMAPHARESIS is somethng to think about...

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    Default PLASMAPHARESIS is somethng to think about...

    hi everyone!

    i've been away for a long while, but am so glad to be back. last year was just horrible healthwise, and LUPUS almost took me out. my seizures were out of control, it was shutting down my lungs, heart, connective tissue, and my central nervous system. but a procedure called "PLASMAPHARESIS" (PP) seems to have helped tremendously! i had posted last year sometime asking if anyone had heard of it or had been through it, and no one here had. i couldn't find alot of info on it in regards to LUPUS. it's mainly used for other serious diseases, and mainly for children.

    it's a process of blood/plasma transfusions over several weeks (i was in the hospital for 9 weeks, but only because i was so sick. i think the average stay is about 4 weeks, but as you know with lupus, it really just depends on 'your' lupus. basically it's like hardcore dialysis. they have to surgically insert a special catheter called a 'pigtail' into what i think is the carotid artery, because they're withdrawing and putting back huge quantities of blood/plasma. again, depending on what's going on with you're lupus, will determine how many 'exchanges' are needed and how often. i did one exchange every 2-3 days, depending on my reactions. i did a total of 15 exchanges, which, according to the oncology nurses, is a bit more than average.

    before i went through PP, i was living at a pain level of 6-8 EVERY DAY, my tremors were so bad that i couldn't pick anything up, write, and barely type. my seizures (like mini strokes) were out of control. about 3 years ago, when the lupus started on my CNS, i had a huge seizure and then fell down the stairs injuring my brain, so i had a double whammy - CNS SLE AND a brain injury due to it. after that i couldn't walk, talk, and almost completely lost my memory - i didn't know my own daughter, where i was from, nor my birthday (and it's on christmas day!). it was pretty bad. after intense rehab, my speech got better and mobility got better, but not 100%, i suffered/suffer from a type of 'aphasia' which is a speech/word finding/comprehension disorder where i couldn't always understand what was being said or couldn't always find the right word for something. for example, i might call the computer a sausage, and our car a book. i needed a cane or walker on a good day and my wheelchair was never far away. i was a mess.

    now, 4 months out, i'm doing so much better! i haven't had a seizure since early january, and i think it was a mild one. my prednisone dose had come down from 80mg/day to 20mg/day, along with my other medications (plaquenil, cellcept, depakote, lamictal, luvenox injections, zofran). my memory is better, before i couldn't remember what i had for dinner the night before. my pain, tremors, balance, lungs, heart, speech is much better! yes, i still have lupus, and still have many of the same issues - as a matter of fact, yesterday was a not so good day - but they're no where near as bad as before.

    so with all that said (sorry for being so long winded), if you're having a tough time with little to no relief, or aren't making any improvements/seem to be going downhill and fast, then have your doctor look into PLASMAPHARESIS. again, it's not easy at all, but it definitely helps.

    here's my blog that talks a bit about what it was like and has pictures
    http://princesstinybutt.blogspot.com

    thanks for letting me share
    be well
    angela
    ~~~~~~~~~~~~~
    diagnosed 2004 with sle affecting my heat/brain/cns, pulmo fibrosis, and vasculitis
    not a newbie here, been a "we have lupus" member since 2004 under the name ang192

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    I am glad you are feeling a lot better. It must have been such a frightening experience for yourself and your family.
    Diagnosed with Lupus - 22 June, 2010

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    I agree so glad you are doing better. You found something that helped you. This is good.
    Hope you continue to have good days.

    Hugs
    nonna

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    glad to hear that it has worked for you.

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    I too am glad that you found something to help!
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







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    thanks everyone. my experience has been that not that many (in the lupus community) seem to know about PP, so i really wanted to let people know about it, thinking that maybe it can help others. i do hope so.

    well, i hope you all are having a happy day

    be well
    angela
    ~~~~~~~~~~~~~
    diagnosed 2004 with sle affecting my heat/brain/cns, pulmo fibrosis, and vasculitis
    not a newbie here, been a "we have lupus" member since 2004 under the name ang192

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