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    Re: Building Resistance to Rituxan

    Hay,

    i started rtx every 6 months and about 2 years ago started suffering at 4.5 to 5 months and got put on 4 month infusions, 8 months ago I stared suffering at 3 to 3.5 months and now staying...
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    Re: Rituximab V Azathiioprine (Imuran) advise

    Does kinda fit well...

    Sent from my SM-G930F using Tapatalk
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    Re: Rituximab V Azathiioprine (Imuran) advise

    Hay guys, these things never go away very fast any more...

    Getting used to the time it takes to get on the better side if good and still fighting my way back.

    I am getting better, flair signs...
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    Re: Rituximab V Azathiioprine (Imuran) advise

    Hay peeps,

    I have just got out of hospital, i got admitted for 3 days as I could not breath, i thought I was having an asthma attack, but after lots of tests and xrays showed that the chest...
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    Re: New to Wegener world

    Welcome Cathy,

    Yes a very familiar story, it's so daunting the not knowing or understanding. But time does help in getting used to it and seeing the patterns that you have.


    There is so much...
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    Re: Newly diagnosed

    Welcome ;-)

    Good that you have the correct diagnosis!

    Rituximab I find ok, i get heavy lead legs for a day or two after but have got used to planning round it. I have been on it for 5 years...
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    Re: Non Pill Help

    Oww love the idea of the cooling pillow, looking for one straight away, i randomly get the night sweats on or off the pred so would be great...

    Thanks
    Bx

    Sent from my SM-G930F using Tapatalk
  8. Re: New member. 57 years old. expecting the best

    Welcome Angie ;-)

    Sent from my SM-G930F using Tapatalk
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    Re: Rituximab V Azathiioprine (Imuran) advise

    Hay guys,

    Thanks for the sound advise, i did read it soon after you posted, but been batterling with this for a bit again..

    just had it confirmed with labs that I am in the middle of a flare...
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    Rituximab V Azathiioprine (Imuran) advise

    Hay gang,

    Please could you help with some advise or pointers on what i should be doing/asking, i have been loving reading your posts but not found answers that satisfy me yet.

    I have just had...
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    Re: First rituximab infusion

    Hay Lisa,

    Hows your infusions going now?

    I have them every 4 months and took a week to recover when i first started with them 5 years ago, but luckily now can return to work a day or two...
  12. Re: Hello! Freshly diagnosed, New to the Forum, Here’s My Story.

    Hi and welcome Brittany,

    So glad you have been diagnosed and can work towards treatments that help you, thoughts are with you about your partner and a very tough trip you had to get to this...
  13. Re: What have we learned about living with WG/GPA?

    Lol love that and use it all the time, mostly "I am a dipstick"...


    Sent from my SM-G930F using Tapatalk
  14. Re: Diagnosed in Dec 2017, just now getting around to saying hello

    Hi and welcome Mattieus,

    So glad they realised what it is and started to deal with it, hindsight is a wonderful thing and if we knew the half of what happens to us in advance we could prevent so...
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    Re: Reducing prednisone

    Also might be worth reading this thred:

    https://www.wegeners-granulomatosis.com/forum/threads/5719-Tapering-on-predizone
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    Re: Reducing prednisone

    Hay Masha,

    I know your pain, is it all of you teeth or just one or parts? when i get it its all of mine, but not for very long just a week or 2, it comes and goes as does the condition...

    How...
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    Re: I might have Wegeners or not...

    Hi,

    As all the loverly people above have said, please push the rumatoligy department to see you!

    I got my GP to refer me as she suspected a vasculitis problem and Rumatoligy have been...
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    Re: Newbie to forum

    Hi Sherry,

    Welcome sounds like your headed in the right direction in the medical area and hope they help..

    Ben

    Sent from my SM-G930F using Tapatalk
  19. Thread: Anniversary

    by BenHornsby
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    Re: Anniversary

    This thread made my day ;-) most posts are questions or problems and to read the positive side of this exclusive club..

    Congrats VW long may it last and look forward to hearing your advise and...
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    Re: Male pasient and possibilities for a baby

    Hay Kitekite,

    I had the same concerns, i was diagnosed just after my first born and he is 5 years old now and perfect in every way... I do worry every time he mentions pain...

    I also spoke to...
  21. Thread: Transplant

    by BenHornsby
    Replies
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    Re: Transplant

    Gilders thoughts are with you, it's so tough having the excitement of a solution that does not work out the way you intended.

    Ben

    Sent from my SM-G930F using Tapatalk
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    Re: Read it Like a Novel

    Thanks Masha

    Big hugs to every1, sometimes we need reminding how special every1 is and you just did that...

    And yes Andrew I can't say it enough thanks so much for your efforts in keeping this...
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    Re: I love someone with Wegeners

    Hi

    And a very big welcome, it is a revelation just to read some of the stories and even better therapy/help for me to post about it, as it helps me come to terms with being a Weggie and all the...
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    Re: Diagnosed when I was 15

    Hi Weston,

    Thanks for sharing your story and welcome to this elite club.

    So glad they are getting faster at recognising our condition and congrats on the insurance, i am on rituximab and love...
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    Re: My Introduction & Story

    Hi Gliders,

    Thanks for that I have seen the name Dr Jayne before in papers I have read and would not have a problem traveling it's just under 100 miles so a couple of hours. I did find some names...
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