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Thread: Way Sick

  1. #71
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    Thanks, everyone. I'm so grateful for your kindness. My friends are very compassionate (it helps to hang out with monks and nuns, you know?), and it's also nice to be able to come on here and vent.

    Elephant, I got down to 1mg pred last year and was doing fine. I ran into trouble when I dropped below it too quickly--not Wegs activity, but adrenals shutting down. Because of adrenal issues, I might not be able to get off pred completely but probably only need 0.5 to 1mg. For the 2.5 yrs I was off pred I was in terrible shape. The disease wasn't under control, though so it's hard to say. Right now I can't get below 3mg out of concern that it'll wake up the Wegs even more.

    I'm a good example of how you can have the disease under control but still be in terrible shape due to collateral damage and other complications. Really tired of being such a good example, though.

  2. #72
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    I.m with you on this one and holding at 4mg,= being too scared of another flare and cytox
    Jolanta

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    Jolanta, I'm so glad you got down to 4 mg. Weren't you on 10 mg for a long time?

  4. #74
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    Hey Sangye,

    I've been thinking about you a ton lately. I've been more off the computer than on (just the odd drive-by posting) but you've been on my mind. I sincerely hope that things iron out for you SOON! This is crazy indeed what you're going through. I hope with all my heart that you feel better soon. You're such an inspiration for soo many people, and if I could magically appear there and make things better, I would in a flash. Take care of yourself.

  5. #75
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    Sangye Isn't there a blood test that can check if your adrenal gland is working? I thought I read that somewhere.

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    Yes, it's AM Cortisol. But you can't be on any pred or it just measures the pred.

  7. #77
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    Yes I was on 10 for 3 months. This time the tapering is working and I don't want to muff it up. I took close to two months per 1mg down. On a good note, I am goin g to do the oxymetry soon to see how oxygenated I am at night when I snore. Sangye, did they start you off with the oxymetry or right away with the sleep evaluation
    Last edited by jola57; 01-10-2011 at 06:49 PM.
    Jolanta

  8. #78
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    Quote Originally Posted by jola57 View Post
    Yes I was on 10 for 3 months. This time the tapering is working and I don't want to muff it up. I took close to two months per 1mg down. On a good note, I am goin g to do the oxymetry soon to see how oxygenated I am at night when I snore. Sangye, did they start you off with the oxymetry or right away with the sleep evaluation
    Oxymetry, is that where they put that little clamp on your finger when the nurse comes around to check your blood pressure as well?

  9. #79
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    Yes, phil it is a clamp that goes on top of your finger and measures you oxygen level.

  10. #80
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    Quote Originally Posted by Sangye View Post
    Yes, it's AM Cortisol. But you can't be on any pred or it just measures the pred.
    The n whata happens if your addrenials don't kick back in??? back on pred

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