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Thread: Vancouver, BC, Canada?

  1. #11
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    Jolanta-- have you called or emailed the VF to ask for help? Many VF docs consult internationally.

  2. #12
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    moyan, I am here if you ever want to talk, just a phone call away anytime of the day or night. If I can't answer I will call you back. Keep well and positive
    Jolanta

  3. #13
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    Thank you Jolanta, I am in a pickle right now, despite never having had a full remission, I think I am having a flair. Many small signs and lungdoc said yesterday that inflammation factor is up. And no reliable doc!
    If we could find that supportgroup, maybe we could get a doc to become a wg specialist. I have an ENT app. Wed and will talk with him, he seems very knowledgable and has had or have some wg patients, more than 10.
    Today is not a positive day, but there is one good thing about that: Tomorrow is gonna be better

  4. #14
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    Sorry to hear this Moyan. It's ok to have a not so good day, like you said tomorrow is gonna be better!

  5. #15
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    Hi elephant, thanks. I hope your worst turmoil is over and events have quieted down a bit. Actually, I am not sad any more, took some extra preds and got some immidiate energy. I always wonder how I would know if wg acts up, and now I know: It starts with I don't want to get up in the morning and then I leave the dishes spread on the counter! So now I have a visual alert

  6. #16
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    Moyan, please ask your doc before taking extra pred. It's dangerous....

  7. #17
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    I GUESS WE ARE ALL HAVING A NOT PARTICULARILY GOOD DAY.
    Happy Easter to all and may you have a bunny day tomorrow. I am picking up my son tomorrow, go to the Polish Church to bless the eggs (polish christian tradition even if its pagan) so I am hoping that tomorrow is definitely a better day.
    Jolanta

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    I had a couple of hours today that I felt less dead. Then dead came back. I only lowered pred by 1/4 mg yesterday and today. Wondering if I'm less dead because of that!

  9. #19
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    Sangye what dose are you on now. I can't seem to taper from 8, I have been alternating with 7 for over a month. Sheesh can't believe it has been 3 and half years of pred.
    Jolanta

  10. #20
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    I've been on 4mg since September. It doesn't sound like much, unless you know that each 1mg acts like 10mg in me.

    My Wegs doc suggested tapering by 1/2 mg or even 1/4 mg. I decided to start by dropping to 3.75mg each day and see how it goes. If I'm okay after a few days I'll alternate 3.75mg and 3.5mg. He said I could do it any way I wanted, as long as I don't drop more than 1mg per month.

    Maybe alternating between 7 and 8 is just too big a jump for you. What happens when you do-- do you get Wegs symptoms or what?

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