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GCA & PE

Posted , 6 users are following.

gill14817
gill14817

I've just come backi

0 likes, 17 replies

17 Replies

  • gill14817
    gill14817

    Posted

    Sorry did that on my phone and went prematurely!!

    Just come out of hoital with blood thinners and a diagnosis of PE. Not nice, any information out there regarding PE and GCA, connections, prevention, my doctor thinks its not related, I'm not so sure.

    Thanks Gill

  • ptolemy
    ptolemy gill14817

    Posted

    There was an article some while ago saying that there is the possibility of a link betwen PE and GCA. It was by some French doctors.
    • EileenH
      EileenH ptolemy

      Posted

      There is a Canadian study from last year:

      "The risk of deep venous thrombosis and pulmonary embolism in giant cell arteritis: a general population-based study

      J Antonio Aviña-Zubieta, Vidula M Bhole, Neda Amiri, Eric C Sayre, Hyon K Choi

      Conclusions and significance: These findings provide general population-based evidence that patients with GCA have an increased risk of VTE, calling for increased vigilance in preventing this serious, but preventable complication, especially within months after GCA diagnosis."

      Another link says (about this reference):

      "Giant cell arteritis (GCA) patients face nearly triple the risk of new venous thromboembolism (VTE) over that in the general population, especially in the first year after GCA diagnosis, this Canadian study finds."

      Gill - your doctor is wrong. 

      If you are now on anti-coagulant therapy you are at less risk. Obviously this paper is suggesting that iwhen we have GCA we should not only be on aspirin which is standard but also on "real" anticoagulants.

      PE is not nice - hope you get well soon.

    • gill14817
      gill14817 EileenH

      Posted

      Thanks for that, yes I'm on clopidogre....have a heart problem too,  and now rivaroxaban from the hospital, down to 45mg predisolone that I'm reducing by 5mg every two weeks until I get to 20mg and then I will be taking advice from you all again, will be a while yet unfortunately.

      My little grandaughter did tell me I looked like Emily the train from Thomas the Tank Engine, big round smiley face, bless her, they love you regardless.

      Gill

    • jane37712
      jane37712 EileenH

      Posted

      Interesting to read this Eileen.   My husband has GCA and had a massive PE on January 4th and was lucky enough to recover.   At a meeting with his consultant yesterday she says the GCA did not cause it.   She has carried out many tests which are all clear so cannot explain why this happened.   He is on Rivaroxaban and is down to 3 mg a day of prednisolone.  He is also waiting for an op for Glaucoma as the steroids have pushed up the pressure in his eyes.
    • EileenH
      EileenH jane37712

      Posted

      How does she know? Ask her if she would have said the same if he had had a stroke? About 18 months ago a 37-year old man in South Wales died of stroke. At the autopsy the conclusion was he had died of stroke due to undiagnosed (unrecognised) GCA. Pathologists know it all - just they are always a bit late!
  • judytal
    judytal gill14817

    Posted

    Sorry what is PE?
    • judytal
      judytal EileenH

      Posted

      I did not write that?  Wonder if someone else can use my name ??
    • ptolemy
      ptolemy judytal

      Posted

      It was written a month ago. Do you think you might have forgotten? 
    • judytal
      judytal ptolemy

      Posted

      Didn't notice " month ago ".   Thanks, Ptolemy ...  I know my head is a little foggy some days !!  It's raining so much here I think I'm waterlogged!!

      take care and thanks...

  • LisaCACO
    LisaCACO gill14817

    Posted

    bummer! have they tested you for any of the genetic factors for blood clots, like factor V leiden? 

    I'm one of those "lucky" ones who  is heterozygous for Factor V leiden and also has GCA. I've had two superficial thromboembolisms in my left arm since january of this year. When I flew to italy in march they kept me pumped on Lovenox (LMW heparin). They're discussing whether to keep treating me with anticoag, but I'm kind of fighting it. hate coumadin. lovenox every day, yes, but that's expensive and i'm sure they'll fuss. 

    hope you cope better on those. 

    • EileenH
      EileenH LisaCACO

      Posted

      I'm on Sintrom, a variant of coumadin I think - no problems at all. The Lovenox injections would drive me nuts over time! I was on LMWH for a few weeks originally - the bruises took months to go!

      What about one of the new "don't have to monitor" ones? Not that I would accept the "don't have to monitor" bit personally and they do have the downside of there not yet being an antidote. 

    • LisaCACO
      LisaCACO EileenH

      Posted

      I don't trust those new ones wink. I'll let other people be the guinea pigs.
    • EileenH
      EileenH LisaCACO

      Posted

      Me neither - I was offered one at the last major check-up I had: "Has anyone told you about..." was as far as she got before I politely declined! They had just had some media coverage suggesting that maybe it WAS a good idea to monitor since there had been some wacky INRs spotted. I'm sorry - when we all are so different and they'd only been through clinical trials, how could they be so sure there weren't going to people to didn't obey the rules?

      Above all, the thought of having an accident and then needing pints and pints of blood as the only antidote to bleeding out really didn't appeal rolleyeseek

    • LisaCACO
      LisaCACO EileenH

      Posted

      lol! thank goodness other folks are willing to be dazzled by the newness of the drug. we'll let them tell us whether it's safe :D. 

      I'm stable on LMWH, but on coumadin my numbers jumped all over the place no matter what. Who knows why-maybe because I'm a vegetarian, or maybe it's just because I'm me, I don't know, but it was awful. Coumadin also made me so fatigued, spacey and stupid I almost set fire to my house.  LMWH never does that. I'll take a few bruises anytime.  Now I only need the LMWH when I travel or take certain drugs for short term.  Now as stupid as I am on the prednisone, gabapentin and topamax, if they add coumadin to it I'll be as dumb as a rock-a very slow, dumb rock...

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