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    Re: The Legend Leonard Cohen

    I always smile when i see Leonard Cohen and think of Jack. To me and my mind they are one and the same (but obviously not). I miss Jack so much, what a sage he was.
  2. Re: Female- Yeast Infection Treatment and safety of probiotics

    Hi Sissy

    I hope you are now free of yeast infections so this post may be fruitless.

    I have just had a bout of sinusitis, treated with antibiotics and subsequently have been battling a yeast...
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    Re: I don’t feel sick

    Happy Disease-versary Pete - i have also been diagnosed 13 years this year.
    It's been an education, that's for sure.

    I think i found this forum within days of my diagnosis and i am so very glad...
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    Re: hearing and vision loss

    Hi drz

    I would be very interested to know what symptoms you (or others) are having with their eyes. I am flaring and my eyes are somewhat blurry, not all the time and wearing my reading glasses is...
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    Re: RTX Efficiency

    Hi Bindy

    I think thats what happened to me. I was on RTX for years and over time, and the cells would come back quicker each time. I do think switching between the two different form of RTX was...
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    Re: Saddle nose reconstruction surgery

    Hey Vera

    Apologies, my message may come too late - i hope you have found a hospital that can help your husband. I had nose reconstruction surgery ten years ago in the UK but they used cartilige...
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    Re: Nasal crusting and nosebleeds

    Hi DRZ

    I don't have a lot to offer in way of advice. But i know that putting coconut oil in my nose helps to break down crusting.
    I am sorry to hear you're having these pesky symtoms despite...
  8. Re: Let's talk about "limited" Wegeners...

    I like that drz. GPA localised to the sinuses, localised to lungs... etc.
  9. Re: Let's talk about "limited" Wegeners...

    Thanks Christina.

    I think your final comment is spot on "GPA is called a 'systemic' disease.
    The whole system is involved, even if it is called only 'limited'...:sad::ohmy:"
  10. Re: Let's talk about "limited" Wegeners...

    Interesting point Don (Hello by the way! Havent spoken to you in years :biggrin1: )

    Maybe its me having issues with medical terminology? The wording is somewhat derogatory to me, and i've felt...
  11. Re: Let's talk about "limited" Wegeners...

    Couldnt agree more JBee.
  12. Re: Let's talk about "limited" Wegeners...

    I think, in my mind anyway, that "mild" and "limited" are the same thing.
    Thank you for replying :thumbsup:
  13. Re: Let's talk about "limited" Wegeners...

    My favourite reply so far! :hug3:
  14. Let's talk about "limited" Wegeners...

    Evening All

    I've wanted to post about this subject for a while now so please excuse my ramblings in advance and everything below is said with the upmost respect for all of us diagnosed with this...
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    Re: Sinus issues - what to expect?

    Hi tmesis

    Glad to hear the examination went well.
    When you've been in the game a fear years (and feel brave enough) get them to allow you to see what the camera shows.
    I have a hole in my...
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    Re: How are you doing ?

    Hey Mishb

    I'm back. Been away from the forum and other support groups for a while as i went through a really rough patch 3 years ago when i flared hard.
    Currently on the ABROGATE trial and...
  17. Re: Hello everyone! I’m a Wegener’s patient diagnosed in my early 20s

    Hi Anabanana

    Welcome to the forum.

    I've been diagnosed 11yrs now with GPA and also have the "limited" version - GPA really loves my nose and has been happily co-habitating on and off in there...
  18. Re: GPA with right sided pseudo tumour ,leptomeningeal thickening,peripheral neuropat

    Hi Gary

    Being tagged by Alysia I feel duty bound to reply :).
    I am under Addenbrookes and would say easily that Dr Jayne is the top bloke to see or have your doctor's consult with, especially...
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    Re: Abatacept/Abrogate clinical trial

    Hi Me2, the abatacept trial finishes in about a years time. For me in the UK it isnt approved yet for WG but if i take it and it works for me Addenbrookes will put in a good case for me to continue...
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    Re: Abatacept : Pred / Avacopan / Systemic Adjustments

    Hi to anyone reading this.

    I wanted to bump this post as i know there are 60 people worldwide on this trial and it would be nice to chat to someone else who is on this trial.

    Just to give a...
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    Re: Coronavirus and GPA

    Thanks for thinking of me Alysia... I would not touch Truxima again with a ten foot barge poll. Started off two years of hell with me and I also know of two other Weggie friends who have not had...
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    Re: Abatacept : Pred / Avacopan / Systemic Adjustments

    Thanks Tom for your feedback. I am still feeling very much like I have been hit by a truck. Fatigue is ever present. I have only a few more weeks left on the pred and the taper gets slower now so I...
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    Abatacept/Abrogate clinical trial

    Hi all, has anyone else started this trial? I am the first one at Addenbrookes to start and just wondering how other people have taken to the trial?
    I am now in week 7. Its odd getting used to...
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    Re: Glad to be diagnosed

    Geoff, I was at Adds today! Clinic 12 for me. Good to hear how you're doing.
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    Re: Hydroxychloroquine?

    Hey mishb

    I never do anything the easy way. I have to be complicated. Thank for your feedback re plaquenil. I am hoping this works for me as well as whatever drugs I get to next. The MTX does...
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