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

    I like that drz. GPA localised to the sinuses, localised to lungs... etc.
  2. 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:"
  3. 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...
  4. Re: Let's talk about "limited" Wegeners...

    Couldnt agree more JBee.
  5. 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:
  6. Re: Let's talk about "limited" Wegeners...

    My favourite reply so far! :hug3:
  7. 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...
  10. Re: Hello everyone! Iím a Wegenerís 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...
  11. 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...
  19. Re: ABROGATE trial: Abatacept for the Treatment of Relapsing, Non-Severe, Granulomato

    I'm possibly going on this trial once the RTX is out of my body. It's a drug that's works for my mum to keep her arthritis in check and has been the only drug that work for her long term so fingers ...
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    Re: Hydroxychloroquine?

    Hi Alysia.

    You've raised a lot of good points. I did have the premeds required to stop reactions but reacted anyway. I would love to hear from others who have reacted after long term use as RTX...
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    Re: Hydroxychloroquine?

    Hi drz. I can't seem to get a straight question about my symptoms. They keep saying there is something else going on with me but obviously it's not showing in my bloods but symptoms are on the...
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    Re: Building Resistance to Rituxan

    Hi drz. Ita amazing how even now Jack is often thought of and spoken of. He will always be remembered fondly by me as he was the main reason I went to Addenbrookes and its been the best thing I've...
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    Re: Building Resistance to Rituxan

    I may be late to this party but I am in this boat right now.
    I've had RTX for at least 7 if not 8 years in various protocols under Addenbrookes. Last June I have the new generic brand of RTX called...
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    Hydroxychloroquine?

    Hi all

    Extremely long time and no posts from me.
    Those who do know me know I like to be difficult, or rather my disease likes to be difficult. I have the persistently grumbling sinus type of...
  25. Re: Will be seeing my doctor to if I have Wegeners

    Hi hazeleyes. Certainly sounds like you are on a similar path to me. I don't come on this forum much anymore but if you need someone to talk to please direct message me and I would love to offer you...
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