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Thread: Diagnosed at 16

  1. #21
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    Quote Originally Posted by annekat View Post
    I think if it was me, at this point, I'd just go ahead and split the 10mg. pill and take 5mg. a day. If indeed that's the overall dosage you should be on.
    I would think that would be the case as well if he is able to cope with 10 EOD.
    Phil Berggren, dx 2003

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    Quote Originally Posted by pberggren1 View Post
    For sure. This could very well be the case. But I would still question the dosing of it EOD.
    You are right Phil, every other day simply does not make sense....Alison was on RTX with a pretty fast taper (within 6 weeks), but it was never EOD.

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    Ian,

    Glad to here you got a dx so quickly, getting the proper tx fast is very important. Welcome to the group, sorry you had to go thru all that at such a young age. It seems that you are wise beyond your years. Best wishes to you for future wellness.
    Jana

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    Hi Ian,

    My son was diagnosed 2 years ago when he was 15. He had a lot of kidney damage, missed a lot of school and it took him a year to get back to normal with school and activities. It's great that you are already back at school and doing so well. You mentioned tennis several times in your post. My son plays baseball. He had to work really hard but he was able to get back into shape and does play on his high school team. You are correct that this disease is very rare in kids...I read that statistically there are 150 kids in the US with it. Sorry that you have to be one of them.

    A great resource and a good place to find a vasculitis expert is the Vasculitis Foundation website. Someone mentioned their symposium that is happening in Chicago this month. The speakers are great and the information for someone who has been diagnosed in the last year or so is terrific.

    Good luck to you!

    Sue

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    Hi Ian. I, too, was diagnosed at 16. This was almost exactly 3 years ago (I'm 19 now), and though taking almost as long getting to full remission, I have been functioning normally for almost a year and a half now. I'm currently studying for a Bachelor degree in business administration and economics.

    Good luck, I hope you get lots and lots of years with no flares And that you'll be one of the lucky ones that don't have much symptoms between flares.

  6. #26
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    Hi Ian, welcome to the group. You're a talented writer. I can see why you're in several AP classes! It broke my heart to see that you had to drop one. My favorite line in your original post was the comparison of the liver biopsy to a "snake in the African plains." LOL

    So-- you've been through a lot already. Let's hope that you'll have smooth sailing from here on. To second (or third, I forget) the idea: you definitely need a Wegs specialist. Check out Mayo in Rochester or Cleveland Clinic in Ohio. Those are the closest to you. Worth the trip!

    Alternating the 10mg and zero days is not the typical way to taper but I've seen it done before, particularly with kids. Basically, if you're feeling fine then it's working fine. If you're more wiped out on the afternoon of the zero day (or have an increase in other symptoms), then it's not working and you'll need to be on a daily dose. Please do NOT change the dose or the way you take it without your doctor's instruction. Pred is a very dangerous drug to mess with.

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    Hey Ian, I'm Zoe
    I was diagnosed at 15 and also recently found this site. It sounds like you have had a lot to deal with! It's great that your friends have supported you through this, I think it can be hard for people our age (or any age for that matter) to understand just how much there is to deal with on top of school etc.
    I hope you are feeling well and continue on the long road to remission.
    Your weggie from New Zealand
    Zoe

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    Thanks for all the advice and support, everyone. I'm now down to 5mg of prednisone every other day, as they are tapering me off slowly. And it's really exciting to meet other people around my age with Wegener's. I hope the best for you and everyone out there.
    “Yesterday is history, tomorrow is a mystery, today is a gift of God, which is why we call it the present.”
    ― Bil Keane

  9. #29
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    Ian I like the quotation by Bill Keane, but for me it does need a little alteration:-

    Yesterday is history: Unfortunately I have got to that age when yesterday is a mystery ....... I know I had my keys because how did I get in the house, so what did I do with them?

    Today is a gift of God: True, but it is also a mystery. Will I have enough spoons to get through the day? Will I get through a day without someone saying "Oh youi do look well"? Will I murder the latter person?

    Jim
    You give but little when you give of your possessions. It is when you give of yourself that you truly give. Kahil Gibran

  10. #30
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    Hi Ian....my daughter was diagnosed at the age of 20, after previously being diagnosed with Crohn's at 14. Per this post...I heartily endorse and second all said by Sangye! Get thee
    to a vasculitis center. You will not regret that decision. Not ever!

    Quote Originally Posted by Sangye View Post
    Hi Ian, welcome to the group. You're a talented writer. I can see why you're in several AP classes! It broke my heart to see that you had to drop one. My favorite line in your original post was the comparison of the liver biopsy to a "snake in the African plains." LOL

    So-- you've been through a lot already. Let's hope that you'll have smooth sailing from here on. To second (or third, I forget) the idea: you definitely need a Wegs specialist. Check out Mayo in Rochester or Cleveland Clinic in Ohio. Those are the closest to you. Worth the trip!

    Alternating the 10mg and zero days is not the typical way to taper but I've seen it done before, particularly with kids. Basically, if you're feeling fine then it's working fine. If you're more wiped out on the afternoon of the zero day (or have an increase in other symptoms), then it's not working and you'll need to be on a daily dose. Please do NOT change the dose or the way you take it without your doctor's instruction. Pred is a very dangerous drug to mess with.

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