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  1. Re: Some questions my doctor hasn't answered (well a lot of questions LOL)

    I recognize the weightloss that you mention.
    Prior to my diagnose of GPA I also lost weight.
    After proper treatment my bodyweight became 'normal' for my lenght again.
    I am even a few pounds...
  2. Re: Let's talk about "limited" Wegeners...

    You're so right, drz!
    No-one can can define better what it's like to deal with auto-immune diseases than you do.
    It's wonderfull to see you writing here on the forum again...:thumbsup:
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    Re: Vancouver, BC, Canada?

    I cannot help you with a supportgroup in Vancouver, but I hope you 'll be able to talk to your doctor soon.
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    Re: Hi I'm Arlene and I'm new here!

    Hi Arlene.
    Welcome here.
    One day at a time is always a good idea ;)

    I hope you 'll soon feel better!
  5. Re: Happy birthday wegeners-granulomatosis.com!!

    I had to search this site for 'The Gorrilaz', Marta. Now I know it's a Britisch rock group, haha.
    Jack sure was a precious member of this group, he wrote me messages I will never forget......
  6. Re: Most Likely Diagnosis is WG/GPA

    I know nosebleeds and sometimes saddle-nose are symptoms of GPA.
    I did have the nosebleeds, but was lucky enhough not to develope a saddle-nose, for which I was quite scared of in the beginning.
    ...
  7. Re: Let's talk about "limited" Wegeners...

    I think 'limited' refers to forms of GPA that did not affect any major organ, especially the kidneys.

    The symptoms I have are mostly limited to the nose and sinuses, and exist of 'stuffed...
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    Re: Happy Birthdays Thread

    Happy Birthday Mishb/Michelle!

    :thumbsup:

    I hope you have a nice day, and a whole lot of Birthdaycake...
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    Forum activity

    Hi forum members and readers,

    It has been months now that the number of new topics seem to decrease.
    Still I see that the forum is used quite a lot, most of the time nearly a thousand people are...
  10. Re: Update: First Round of Rituxan tomorrow

    Hi Ashley,

    Good to hear all went well, although the 'throat closing-reaction' must have been frightful.
    I hope you can take some rest, and soon will start to feel better in the next few...
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    Re: Greetings Everyone!

    Hello jrslim,

    Sorry to hear you got diagnosed with GPA.
    I hope your insurance company approves your treatment, and that you 'll soon feel better.
    Keep us posted how you're getting along...
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    Re: Third Vaccine

    I 've had two Pfizer-shots, the last one in June.
    Also I took the flu-shot last week.

    After the flu shot I suffered from bloody nose, stuffed feeling in my head and fever.

    Now with the new...
  13. Re: I have not been on here in FOREVER

    Hi Tobey, good luck with your Covid-shot!
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    Re: Happy Birthdays Thread

    Congratulations Andrew!
    Very Happy Birthday to you! :biggrin1:
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    Re: some gpa symptoms- ENT advice

    My symptoms also started 11 years ago.
    My kidney function is checked once a year by the immunologist/nephrologist.
    Anca has been negative for several years now...
    No kidney-involvement till today.
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    Re: Pain in chest wall

    I'm ver sorry to hear that you suffered severe pain, and were immobilized, as you describe it.
    I can not tell if this pain is GPA-related.
    All I can tell you is that I sometimes have chestpain...
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    Re: Surviving COVID-19

    Thanks for this well-written and very informative report.
    It's inspiring to read how you organized help in this threatening situation.
  18. Re: Managing symptoms and treatment for a flare

    Hi drz. Haven't seen you writing here for a while.
    I hope your symptoms are 'manageble', and that your heartrate is within the normal range again.
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    Re: Celebrate how far we have come!

    Good to know you didn't run out of insulin, and also that you were able to recharge your iPhone during treatment.
    Also it seems encouraging to me, that your next treatment will only last for four...
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    Re: Celebrate how far we have come!

    Hi drz, many greetings from the Netherlands!
    I hope you'll soon gain strength again.
    A walk in the park to see egrets sounds nice.
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    Re: Reactions to Covid-19 vaccinations

    I 've had my first 'Pfizer-shot' today, and so far no problems but a tiny bit of a sore arm.
    Second shot is scheduled for june.






    Very sorry to read you have to manage a flare right now,...
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    Re: Coronavirus and GPA

    I haven't been vaccinated yet, but I totally agree with your strategy.
    As you already said, the effects of the Covid-vaccinations are not totally predictable for people with compromised...
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    Re: Coronavirus and GPA

    My husband and I are still waiting to be scheduled.
    In our country healthcareworkers are vaccinated first.
    There is still much discussion about the different sorts of vaccins.
    For example: when...
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    Re: Nose Bleeds

    I have had Wegs for 10 about years now. I didn't have nosebleeds as an initial symtom, but I did have little wounds and crusting in my nose-tissue, next to fatigue and heavy jointpain.
    Nowadays, I...
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    Re: Your Thoughts on Dying.

    Wow, drz. Very good that you found and re-posted this thread!
    This is a scaring episode in our life. Who would have thought that we 'd be facing a real pandemic for months and months?
    I remember...
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