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  1. Thread: Anniversary

    by Jules
    Replies
    21
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    2,130

    Re: Anniversary

    Great news! Enjoy your travels, our difficult journeys make the good times even sweeter!:thumbsup:
  2. I think you're absolutely right, everyone's...

    I think you're absolutely right, everyone's journey is different (part and parcel of us all being so 'special'!!��). The additional exercise sounds easy in theory, but is often the last thing on my...
  3. Today reduced to 2mg after tapering from 30mg for...

    Today reduced to 2mg after tapering from 30mg for a flare in January.

    When battling with weight gain from pred following diagnosis in 2010, my nephrologist told me that even a top athlete...
  4. Thread: Sick & Tired

    by Jules
    Replies
    89
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    6,764

    Hope you get some answers soon Alysia - hang in...

    Hope you get some answers soon Alysia - hang in there, you're stronger than you think! :hug2:
  5. Replies
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    11,503

    Inspirational! :thumbsup:

    Inspirational! :thumbsup:
  6. Thread: Bowel Flare

    by Jules
    Replies
    37
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    3,594

    Hi Alyssa - thanks for tht info . . . this place...

    Hi Alyssa - thanks for tht info . . . this place comes up trumps every time I have a question. . . It's so good to have you all out there with so much advice on hand! :thumbsup:

    I've been put back...
  7. Thread: Bowel Flare

    by Jules
    Replies
    37
    Views
    3,594

    Thanks Rose, that is really interesting to hear...

    Thanks Rose, that is really interesting to hear and sounds very familiar with regard to symptoms being relieved when originally commencing treatment for sinus, lung and kidney involvement! I shall...
  8. Thread: Bowel Flare

    by Jules
    Replies
    37
    Views
    3,594

    Hi All, like Rose I haven't posted in a while but...

    Hi All, like Rose I haven't posted in a while but constantly check-in to see how everyone's doing. Rose & Alyssia, I truly hope your symptoms have continued to improve and that you are getting some...
  9. Marta, that's amazing! The survey was one of the...

    Marta, that's amazing! The survey was one of the first items I looked at on this inspiring site when diagnosed in Jan 2011! Hope you kick this flare soon! x
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    849

    I've have been off Aza for 2 years now without...

    I've have been off Aza for 2 years now without any problems.
  11. Thread: Trish

    by Jules
    Replies
    20
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    1,643

    So young . . . so sad! RIP Trish and huge thanks...

    So young . . . so sad! RIP Trish and huge thanks to Gavin who, in the midst of his tragic loss, is continuing to raise awareness of WG, a condition that simply has no respect for decent human beings!!
  12. Replies
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    Never far away . . . even when not actively...

    Never far away . . . even when not actively posting, I always try to check in and get an update on how folks are doing. This site is like an online comfort blanket . . . always there when we need...
  13. Replies
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    Alysia, we may not have Phil with us in person...

    Alysia, we may not have Phil with us in person anymore but you have something special that no-one can ever take away from you . . .your wonderful memories! (the photos are fab!). Stay strong - you...
  14. Replies
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    After my first six weeks in hospital (during...

    After my first six weeks in hospital (during which time I chose not to study too closely the person in the mirror that was a shadow of my former self!) I had no idea my nose looked any different. It...
  15. Replies
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    94,196

    I've been off the site for a while and am so...

    I've been off the site for a while and am so sorry to learn to how poorly Phil is. Alysia, if it's any help, my plasma exchange was carried out on week days with weekends off. Thinking of you both...
  16. Replies
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    My level has gone up further this week, from 42...

    My level has gone up further this week, from 42 to 53 and am on antibiotics for a bout of sinusitus. The antibiotics seem to be working, so my consultants are just keeping an eye on me for a while.
  17. Replies
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    Having just read this thread from the beginning,...

    Having just read this thread from the beginning, it's great to hear that you are feeling so much better Mike.:biggrin1:

    I couldn't agree more about giving thanks to our 'nearest and dearest'...
  18. Replies
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    1,266

    You're so right - we're all VERY SPECIAL. . ....

    You're so right - we're all VERY SPECIAL. . . lucky us!:rolleyes1:
  19. Replies
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    1,266

    Thanks, that's interesting to know Phil - have...

    Thanks, that's interesting to know Phil - have now developed a cough and cold (but chest x-ray last week was clear, so am thinking it probably is just a cold). I wish there was a definitive rule...
  20. Replies
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    1,266

    ANCA advice anyone?

    Hi All - does anyone have any experience of a change in ANCA results without any other symptoms?

    Just had latest bloods back and, for the first time in 2 years, my ANCA has come back positive with...
  21. Thread: Imuran taper

    by Jules
    Replies
    5
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    1,528

    Hi Pete - at 2.5mg however hard I tried to lose...

    Hi Pete - at 2.5mg however hard I tried to lose the weight I just couldn't shift it and like you my exercise was walking (on the plus side the dogs have never been fitter!). It was with relief that...
  22. Thread: Imuran taper

    by Jules
    Replies
    5
    Views
    1,528

    Hi drz - was at 150mg, was taken to 100mg and...

    Hi drz - was at 150mg, was taken to 100mg and after seven weeks and just about to start 50mg! So far so good but just hope it doesn't prove to be too quick too soon!
  23. Thread: Imuran taper

    by Jules
    Replies
    5
    Views
    1,528

    Imuran taper

    Hi folks - not posted for a while but have been checking in regularly to see how everyone's doing. The good news for any 'newbies' to the site is that, in my experience, the pred weight does go when...
  24. Replies
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    4,760

    I don't know if we look younger Sharon - when my...

    I don't know if we look younger Sharon - when my cheeks go down enough for me to see out again I'll let you know!!! :unsure:
  25. Replies
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    4,760

    Are you sure you want to disagree with me on that...

    Are you sure you want to disagree with me on that one? Remember I'm a steroidal woman!:predrage:

    I've saved myself a fortune on botox - pred's done the job nicely!
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