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Type: Posts; User: Alysia

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    Re: Let's talk about "limited" Wegeners...

    I can't bear the "limited" title :sneaky:

    I was considered to have "limited wg", "only" in my lungs, nose and ears in the first years. So for the few couple of first years the only treatment that...
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    Re: Happy Birthdays Thread

    Happy Birthday dear @mishb :hug3:

    https://youtu.be/EqxFd_7dWx0

    I like it how they cheered up for him. May it be ours for you :love:

    May your day be as awesome as you are
    And may you
    Keep...
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    How are you doing ?

    I thought we can have this thread to update, how are you doing, my friends ?
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    Re: Another Warrior has lost his Battle!

    Thank you, vdub.

    I hope that you are doing well. If you feel like sharing how are you doing, please do. Although I guess not in this thread but in another ...
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    Re: Another Warrior has lost his Battle!

    Another wg warrior flied high, Lisa MacNutt from Little Rock, Arkansas.

    She was infected by covid and it started a chain of breathing problems. They tried the vent in order to calm down the...
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    Re: Happy Birthdays Thread

    Happy Belated Birthday, andrew :hug3:

    Sorry for not being here on your birthday (I was too sick but am recovering now).

    Do you live in a lockdown area ? How are things over there ?
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    Re: pberggren memorial thread

    Every year on this day, the time stands still, and I am back there, on that night in Foothills Medical Center... 7 years ago now.


    ... The sudden knocking on my door waking me up scared around...
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    Re: Pain in chest wall

    Dear drz,

    So sorry to hear about your pain :crying:
    I think it might be the result of too much coughing ? I think we should hold a pillow tight to the chest when we cough a lot in order to...
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    Re: Flare up Freak out

    Leflunomide is a maintenance med like mtx or imuran. But it also treats the wg not bad at all, at least for me.

    I am glad that you are doing better. Step by step. How are things so far ?
  10. Thread: Third Vaccine

    by Alysia
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    Re: Third Vaccine

    I got the third pfizer vaccin about a month ago. Israel started first in the world with it and immune compromised patients were the first to be invited to get it.
    I only had a bit of a sore arm. I...
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    Re: Does any one else have days like this?

    Hi Lilly,

    It is OK to cry. Better let it out then holding inside. You have been through a lot and it is indeed very painful.

    Blessed are those who mourn, for they will be comforted.
    ...
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    Re: Flare up Freak out

    Hang in there, Peter and drz. It takes time to recover from a flare especialy if it is the result of the vaccin. I spoke with a rheumatologist in Israel who investigates the correlations between...
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    Re: Happy Birthdays Thread

    Happy Birthday dear annekat :wub:

    May you have a lovely birthday, full of blessings, joy, peace and LOVE :wub:

    I hope you can celebrate safely, considering the covid situation.

    I still...
  14. Thread: Donations

    by Alysia
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    Re: Donations

    Paypal do take some fee for all transfers from Israel.
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    Re: pberggren memorial thread

    Thank you so much gilders. Happy Birthday to your wife. In Hebrew we say, May she be different from them by having long good life.
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    Re: Managing symptoms and treatment for a flare

    I just found a post from yesterday. So I hope it means that you are well, drz.
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    Re: Managing symptoms and treatment for a flare

    Has anyone heard from drz in the last 10 days or so ? I am worried about him... drz please let us know how are you doing. I pray for you.
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    Re: pberggren memorial thread

    Happy Birthday in heaven, sweetie.


    It's hard to believe that 7 years have passed since your last birthday on earth, since I was your last gift here.


    But you have been and will allways be...
  19. Thread: Donations

    by Alysia
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    Re: Donations

    It is @pberggren1 's birthday already in Oz, so I just made the yearly donation from both of us.

    @andrew, I sent to your paypal but then I saw that there is another link here.

    Please let me...
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    Re: Celebrate how far we have come!

    Dear drz,

    Thank God the rtx treaemt went well and that you can control your diabetes even if it is complicated.

    My first rtx IV also lasted about 8-9 hours and this is how it should be...
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    Re: Reactions to Covid-19 vaccinations

    Dear drz,

    So sorry, I hoped it was not a flare... My heart goes out to you...

    It sounds that you have good docs with a good plan of treatment. So relieved to know that you have a machine to...
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    Re: Happy Birthdays Thread

    Happy Birthday, my beautiful friend @mishb :wub: May your birthday be as awesome as you are :wub:
    @pberggren1 and I love you and wish you many blessings :wub:
  23. Thread: Hello there.

    by Alysia
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    Re: Hello there.

    Welcome to the forum.

    CT once a year sounds ok. But blood tests should be done more often, first every month and later every 3-4 months.

    If I remember correctly we had here someone who had...
  24. Re: Rituximab associated hypogammaglobulinemia:

    Thanks for the important info.

    My Igg and Igm have dropped below the normal so for now I am not allowed to get rtx. My dr prescribed me Leflunomide, which works well for me, although my wg is...
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    Re: Reactions to Covid-19 vaccinations

    Sorry for the flare, drz. Maybe it is the result of reducing the pred to 6mg ? I flared when I tried to reduce the pred from 7mg to 6.5mg every other day, after only 4 days.

    I got the pfizer...
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