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Thread: Blood Clots and Weggies

  1. #61
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    Lightwarrior, Lovenox doesn't require blood testing.The dose is based on body weight. It uses a different mechanism of action than coumadin and isn't affected by vitamin K levels or diet. That means the levels don't fluctuate in the blood like coumadin. I was on it for 2.5 years. (Edit: 2.5 stinkin' years)

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    Quote Originally Posted by Sangye View Post
    Lightwarrior, Lovenox doesn't require blood testing.The dose is based on body weight. It uses a different mechanism of action than coumadin and isn't affected by vitamin K levels or diet. That means the levels don't fluctuate in the blood like coumadin. I was on it for 2.5 years. (Edit: 2.5 stinkin' years)
    You are right, they were testing his PTT when he was on iV Heparin in hospital, now he is getting PT/INR tests and won't be able to stop lovenox until coumadin is therapeutic, which it is not yet and i am still giving him 90mg (high dose is 1mg/kg) twice a day.

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    just been for scan on liver and gallbladder this morning things looked ok will get a more detailed report week on thursday
    but the consult radiologist thinks the pain im having is still due to the multi PE in lower lobe
    when i got back my INR test back low again 1.50 working towards 2-3 was nearly there :} so they have put up warfarin
    hoping to speak to wg consult wed or thurs as not sure if i need to do anything different
    the cough i have is driving me mad let alone everyone else butb the keep saying my chest sounds clear !
    never mind i got breast scan to look forward to on thurs think i would be best taking up residence at hospital as i spend more time there than at home some weeks !!
    never mind roll on tomorrow DEEx

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    Dee, how many weeks have you been below the 2-3 INR range? Also, when did you first get the PE's?

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    hi Sangye
    below the last two weeks having test again in a week and i had the results of first PE on the 20th April
    need to sort out as gp going on holiday for two weeks on friday which im suppose to inform wg consult about anyway
    its just that i seem to be going around in circles at the moment
    what with the above problem -change in medication - and the uncertainty of whats happening next
    still waiting for rhmy consult appointment and urinology appointment feel like im back treading water
    the one good thing is the new hearing aid i picked up on friday helps alot to hear all these doctors !!! got to smile before i scream ! DEEx

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    Quote Originally Posted by jenjenn711 View Post
    Thanks for the advice. I absolutely agree--if it had been my husband with the wegs we'd have been to a specialist ASAP. It's my stubborn dad though, so I have my work cut out for me!

    I talked to my mom about the diet, and after some pressing she admitted that the dietician actually DID describe a non-extreme diet in which Coumadin is adjusted to accommodate balanced food intake. But what my mom heard was something along the lines of "spinach causes clots!" I gave her the info on here and I think she sees that was extreme.

    For jenjenn711 - I'm in a similar situation with my Dad, who has had WG for many years. After his last big flare and hospitalization my parents decided to travel to the 'Big City' for help and it was very much worth the cost and effort. The Vasculitis Foundation is great about recommending specialists.
    Contact info for the VF - Contact | Vasculitis Foundation
    also a list of the top WG facilities, doctors at each, plus info on how to schedule - Best hospitals for Wegener's Granulomatosis

    best of luck

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    Dee, I'm concerned that you're still having so much chest pain. It's been over 2 months since you had PE's. That's a long time to continue having pain from lung clots. When is the last time they did a repeat CT of your lungs to see if the clots are dissolving? Did it show improvement?

    I'm wondering if your cough is from ctx. When I was first on it in 2006, I developed a dry cough during the last couple months. We couldn't figure out the cause until it stopped abruptly when I stopped the ctx. Everything else must be ruled out, though.

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    hi sangye
    its not so much across the chest pain but in the lower right lobe its always been there to some degree but with the cough it makes it more painfull
    im starting to lower cxt down to 125mg until 14th july and 22.5mg preds but the consults need to decided what next as cxt not stopped all symptoms
    they have not done a repeat ct scan i had first one done will i was in hospital im seeing doc that is treating PE next thurs
    they only way of getting a repeat here is if she orders on and then you have to wait for an appointment it took five weeks to get u sound that i had today
    im going to try and see or speak to gp tomorrow or wg consult at hospital on thursday
    DEEx

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    Dee that is where my pain was ( gallbladder), the had to do a Hida scan and that is how the found out my gallbladder was sluggish. LIke Sangye stated need to get another CT to check on those blood clots. Hope things are better for you soon. Hang in there girl! Tripppppplllle chocolate coming your way!
    Last edited by elephant; 07-01-2010 at 02:00 AM.

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    Quote Originally Posted by elephant View Post
    Dee that is wear my pain was ( gallbladder), the had to do a Hida scan and that is how the found out my gallbladder was sluggish. LIke Sangye stated need to get another CT to check on those blood clots. Hope things are better for you soon. Hang in there girl! Tripppppplllle chocolate coming your way!
    thanks everyone wil try to get some answers today DEEx

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