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Type: Posts; User: Elena

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  1. Replies
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    Re: baha hearing loss questions

    I have bilateral baha 5's with abutments and am very happy I made that choice. I never had "normal" hearing aids before, as my GPA rather quickly and aggressively damaged my middle ears beyond...
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    Re: Ear issues - experiences

    I am pretty confident that my rheumatologists will come up with some new treatment plan, I just currently have no clue as to what that could be and whatever it is, it probably will be bad for my...
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    Ear issues - experiences

    Hi everyone!

    I was wondering about your experiences regarding ear issues.

    For the past couple of years my GPA has been in remission, with blood samples all good and slowly reducing the dosage...
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    I've been struggling with tracheal stenosis quite...

    I've been struggling with tracheal stenosis quite a lot too and have had 4 dilations in total. Usually it happens after I've been in remission for around 6 months, because my trachea gets inflamed...
  5. ABROGATE trial: Abatacept for the Treatment of Relapsing, Non-Severe, Granulomatosis

    Hi everyone,

    I was reading a little about the use of Abatacept for treating non-severe, relapsing GPA and came across this trial:...
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    Wow, that's so great, Phil! I'm so happy for you.

    Wow, that's so great, Phil! I'm so happy for you.
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    I have also taken ctx (infusions) and was told...

    I have also taken ctx (infusions) and was told that because of my young age (16 at the time) there was a much lower risk of infertility, and that as long as my periods kept coming regularly...
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    Hi Zoe. I'm 19 and was diagnosed with WG i 2009....

    Hi Zoe. I'm 19 and was diagnosed with WG i 2009. So I know how it is to get this stinking disease at a young age. I'm currently in remission, and I'm studying and working. So don't give up, remission...
  9. Thread: Diagnosed at 16

    by Elena
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    Hi Ian. I, too, was diagnosed at 16. This was...

    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...
  10. I've been taking Bactrim 3 times a week since my...

    I've been taking Bactrim 3 times a week since my diagnosis in April 09. I've been told it is both to prevent new sinus infections and some bacteria that could settle in the lungs.
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    No there really does not seem to be any...

    No there really does not seem to be any prednisolone 1 mg pills to be bought in Norway. But there seem to be 1 mg prednisone pills. Can anyone tell me the difference between prednisone and...
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    Thank you :) I really hope this lasts for a...

    Thank you :) I really hope this lasts for a looong time.

    Well, I'm not sure about how much I'm going to taper at a time, after I reach 5 mg. But I assumed I couldn't split the pills into more...
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    Finally I am officially in remission! It's the...

    Finally I am officially in remission! It's the first time they've dared use that word since I got sick 3 years ago and it feels real good. I've been feeling good for a long time now, however every...
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    I am going to ask about tapering again the next...

    I am going to ask about tapering again the next time I'm going there (in 2 weeks.) It's like every time I'm there I ask about reducing my pred dose, however each time they want to adjust my...
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    Well, that sucks. I had hoped going off pred...

    Well, that sucks. I had hoped going off pred would solve much of my "problems." Not that I see being without pred in my near future anyways. Seems like my docs are veery conservative about pred. I...
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    I'm on 7,5 mg of pred, but I haven't changed the...

    I'm on 7,5 mg of pred, but I haven't changed the dosage since this summer.
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    Question for the ladies.

    Ah, kind of an embarrassing question here. I was wondering if anyone have noticed any changes "down there" after getting WG? Like more soreness, or in the amount of vaginal discharge..

    I'm not...
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    That's great, Phil! I'm so happy for you

    That's great, Phil! I'm so happy for you
  19. Thread: Rash

    by Elena
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    Well, I'm not that much the wiser after my visit...

    Well, I'm not that much the wiser after my visit to the doc. She suspected it might be some infection of a kind, maybe Staphylococcus of some kind.. My Crp was 19, so a little high. I'll be trying an...
  20. Thread: Rash

    by Elena
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    Mine are raised and bigger than freckles. However...

    Mine are raised and bigger than freckles. However the hydrocortisone cream does not seem to help, it is still there with no change.. Going to the doc in an hour, maybe she can shed some light as to...
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    I'm feeling good, still got that stupid rash...

    I'm feeling good, still got that stupid rash though. Thanks for asking.
    Going to see the doc tomorrow and probably take some blood tests then or on wednesday. Hopefully it's nothing to worry about..
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    I'm doing the 2 infusions, it works great for me....

    I'm doing the 2 infusions, it works great for me. Never tried 4 though, so might be that works as well.
  23. Thread: Rash

    by Elena
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    Thank you so much guys, I love being able to come...

    Thank you so much guys, I love being able to come here and get your opinions and advice. I will call my regular doc, to schedule an appointment, and I am going to take some new blood tests just to be...
  24. Thread: Rash

    by Elena
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    Except for the rash I am feeling great....

    Except for the rash I am feeling great. Everything is fine, even my voice is doing a little better, I think. My last blood results are almost a month old, but they were pretty normal. Only thing...
  25. Thread: Rash

    by Elena
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    Rash

    Hi everyone!
    I've been doing really good for a long time now. It's been more than a year since my last dilation of the trachea and the only thing bothering me is being really hoarse. But on...
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