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Thread: Blood Clots

  1. #1
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    Default Blood Clots

    Has anyone had issues with blood clots? I'm in the hospital wow with clots in both legs getting blood thinner treatment but wasn't sure if it was related to wegeners or not. Thanks

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    First of all, best of luck to you while in treatment. I haven't heard of any blood clotting problems yet with WG...clotting is internal in the veins, WG is external ON the exterior of the veins...hmmm...just not sure tho...will do some research on it...
    Knowing how to think empowers you far beyond those who only know what to think. -NdT


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    Hi Victor,
    I am sorry for you, for being in the hospital.
    I don't know if it is connected but ask the docs about RTX and blood clots.
    I hope you will soon feel better
    please update us.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

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    Yes, Wegs makes us more likely to get blood clots.
    Phil Berggren, dx 2003

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    Quote Originally Posted by pberggren1 View Post
    Yes, Wegs makes us more likely to get blood clots.
    How so? Just interested. Is it the disease or the drugs? Thnx Phil.
    Knowing how to think empowers you far beyond those who only know what to think. -NdT


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    Hello, yes I had those when I landed in ER, along with most everything else in the book for Wegs. I assume the clots were triggered by the messed up circulation in the legs. My blood clots were circular red spots all over both legs, like a bunch of red freckles. Looking back I wish I had taken a few photos of them, but I had other things to worry about if you know what I mean. I also had it in the lungs too. When in hospital was put on blood thinners and everything slowly dissolved over time, so hopefully yours will too as you get the inflammation under control. Good luck!

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    It is the disease Don.
    Phil Berggren, dx 2003

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    I remember Sangye talking a lot about blood clots in her legs, one of which became dangerous, as I remember. For the newbies, she is a long standing member who was formerly very active here and has dispensed a huge amount of good information over the years. For the oldies, I have been in touch with her on Twitter and she seems to be OK. I think she has just become very busy with some other things, hence her not posting here often any more. It would not be hard to find her posts on blood clots with a search. In fact, any of her posts are worth searching.
    Anne, dx'ed April 2011

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    Anyone with WG will be more prone to blood clots.

    For the ladies - if you are taking oral birth control pills and have WG, then the risk of blood clots is even higher. You should look at an alternative method of birth control. Please consult your doc.
    Keep Smiling
    Michelle


    Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS

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    Hope you are well soon! Dr Merkel published a study on this: Brief communication: high incidence of venous... [Ann Intern Med. 2005] - PubMed - NCBI

    I've had this & I'm now a warfarin lifer after a pulmonary embolism a few years ago.

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