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    Re: Kidney Involvement

    Hi tmesis,
    I couldn't give an actual figure of what decline would be counted as sudden vs chronic as there's quite a few variables, for example the cause of the decline could be severe damage to the...
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    Re: Kidney Involvement

    You're welcome.
    I actually forgot about the potassium. The reason being, my potassium levels never went to high, even just before my transplant, except for one time when I went to A&E with something...
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    Re: How are you doing ?

    Hello All,
    Only just spotted this thread, so I'll give a quick update.
    Main thing is that my WG is still in remission and my transplanted kidney is still doig quite well at around 35%.

    I have...
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    Re: Kidney Involvement

    Hi @little sisiter
    I've documented quite a lot of my renal involvment on here, but it's probably a bit hard for someone to peice it all together, so I'll try to condense my many years of...
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    Re: Happy Birthdays Thread

    Alysia Thank you.
    Doing well overall.
  6. Thread: Donations

    by gilders
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    Re: Donations

    Small donation sent.
    Thanks again Andrew!
  7. Thread: Forum activity

    by gilders
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    Re: Forum activity

    2013 for me, although I've been living with Wegener's much longer.

    I do go through periods where I tend to pop in to the forum much less. These are usually periods where my Wegener's is behaving...
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    Re: Covid vaccins and WG

    Thanks Masha
    The only person I was near to was a St. John's ambulance member who had been asked to watch over me due to previous bleeding problems after a pneumonia vaccine. She was wearing her...
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    Re: Covid vaccins and WG

    Thanks Pete and a Happy and Healthy New Year to you and your family.
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    Re: Timing of Covid vaccine/boosters and rituximab

    Hardly left the house for almost 2 years and today I received an alert on my phone from NHS Track and Trace stating that I have been in close contact with someone who has tested positive for Covid....
  11. Re: Vaccines and the immunosuppressed Webinar. Oct 28th 1500 BST, 1000 ET

    You can find a replay at https://www.youtube.com/watch?v=A6O6kZxqyCg&t=2779s

    It ends after 45 mins (not the 1hr+ the time bar suggests).
    It wasn't as informative as I'd hoped, but still worth a...
  12. Vaccines and the immunosuppressed Webinar. Oct 28th 1500 BST, 1000 ET

    https://covid.joinzoe.com/webinar/vaccines-and-immunosuppressed

    Thought I'd share the above link for those interested. :smile1:
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    Re: Pain in chest wall

    Pleased to hear the pain has almost gone.
    Hopefully it doesn't return!
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    Re: Happy Birthdays Thread

    Kidney is still behaving itself thanks. I've a few issues to do with pain and severe fatigue, but so long as kidney is stable and wegs is under control, I won't grumble. Hope the lung issue isn't too...
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    Re: Happy Birthdays Thread

    Almost a week late, but Happy Birthday annekat
    Hope you're keeping well
  16. Thread: Third Vaccine

    by gilders
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    Re: Third Vaccine

    I'll be taking the third jab when it's available to me.
    I am on strong antirejection drugs (Immunosuppressants) and considering I had no reaction to the first 2 jabs and the fact that I'm at...
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    Re: pberggren memorial thread

    Happy Birthday Phil and Barbara,

    Missed and never forgotten.
  18. Thread: Donations

    by gilders
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    Re: Donations

    Hi Andrew,
    Sent donation usual way via PayPal.
    I don't suppose Stripe does international transfers for free??
  19. Re: Dr. Appt. - Vaccine did not work (no antibodies)

    I've not been on RTX since before my kidney transplant just over 2 years ago, but I am on daily Adoport (Tacrolimus) and Myfortic (Mycophenolate).
    I received my antibody result today and did not...
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    Re: Gave Up on Facebook Groups

    Kidney function can jump around quite a bit, be it a different lab, what you've eaten and most importantly how well hydrated you are.
    Your best route to keeping kidneys healthy is to be well...
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    Re: Gave Up on Facebook Groups

    Hi Larry. Welcome to the forum.
    Glad your kidneys healed somewhat after a year of dialysis.
    I hope your function stays above 20%. I found that once my function dropped to 18% it was a steady and...
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    Re: Suspected Sneaky Kidney Involvement

    Hi Chadwyck.
    I've not visited the forum for a while, so missed your post. How are your kidneys doing now?
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    Re: Suspected Sneaky Kidney Involvement

    Opioid based drugs are generally safe for kidneys, but doctors are now very cautious prescribing them due to misuse and addiction. I use them, but they become ineffective quickly with me, unless I...
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    Re: Happy Birthdays Thread

    Happy Birthday Michelle!
    A few days late as usual :biggrin1:
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    Re: Celebrate how far we have come!

    So sorry to hear you're so sick!
    Fortunately I'm only on a very low dose of prednisone at the moment, but I really struggle with higher doses. When your emotions get the better of you, remind...
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