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    Re: Daily life considerations and precautions

    i think this is something your care team should advise you on. I have been told that for me the prognosis for surviving Covid or even the flu is not real good because of my age, 79 in a couple...
  2. Thread: Avacopan

    by drz
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    Re: Avacopan

    It suppresses the immune system so for me it replaced RTX infusions. My prednisone dosage was unchanged while taking it. I still had some residual signs of GPA and maybe if I could have stayed on...
  3. Thread: Avacopan

    by drz
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    Re: Avacopan

    A lot of people do fine on Avacopan but it did not work out well for me. If you can afford it or get it free it is worth trying and you might do fine on it for a long time with no problems. Most...
  4. Thread: Avacopan

    by drz
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    Re: Avacopan

    it is very expensive ( about $17000 a month) so even with a good drug insurance plan the co- pay might run close to a $1000 a month but I qualified for free monthly shipments and took it for several...
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    Re: Eyes, Prednisone Blood Sugar

    It is a full time job for many of us!
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    Sticky: Re: How to know when you're having a flare

    Right, initial RTX was a couple before they switched to CTX for faster results. I also had RTX twice after last flare after Covid vaccination. Recently I tried Avacopan or Tavneos but developed three...
  7. Thread: Evusheld

    by drz
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    Re: Evusheld

    I have had this experience too in my rural area. The doctor that tells you he lacks knowledge of GPA is much better than one who thinks he knows how to treat you but has no experience or skill in...
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    Sticky: Re: How to know when you're having a flare

    My doctors have told me i was in a drug induced remission when my maintenance meds kept the GPA under fair control to the point i did not need a more aggressive treatment like RTX. i still had some...
  9. Thread: Evusheld

    by drz
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    Re: Evusheld

    I had no reaction to Evusheld injections but flared after the regular vaccinations for Covid so don't dare take any more boosters shots.
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    Re: Let's talk about "limited" Wegeners...

    It said I had to repost this reply to get it on the forum so sorry if it gets posted double.

    Having any chronic disease that is considered easy to mange is probably an oxymoron. Chronic generally...
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    Re: Let's talk about "limited" Wegeners...

    Having any chronic disease that is considered easy to mange is probably an oxymoron. Chronic generally means there is no cure so even if it is in remission it can always flare up again. My two...
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    Re: Vancouver, BC, Canada?

    I wonder how many people with GPA can access a face to face support group. I suspect only those living in a major metro area could do that
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    Re: Hi I'm Arlene and I'm new here!

    I know many of us with autoimmune disorders had flares of our autoimmune disorders after getting the vaccinations for Covid virus but in your case it seems like it might have been the cause of a new...
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    Re: Happy birthday wegeners-granulomatosis.com!!

    Marta we joined the same month and got diagnosed a couple months earlier. We both remember jack fondly and his encouragement and many helpful posts.We are lucky that we are still here 12 years later...
  15. Thread: Evusheld

    by drz
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    Re: Evusheld

    i got the Evusheld injection yesterday at a clinic in next state where i get a lot of my health care. My local clinic did not have the drug available and our state has a more complicated procedure...
  16. Thread: Evusheld

    by drz
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    Re: Evusheld

    How much hassle was it to get Evusheld? How long did it take to get approved to get it?
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    Re: Evusheld and Ritmuxin

    Thanks for this info. It is reassuring and helpful in dealing with these complex questions about our treatment and management of GPA.
  18. Thread: Evusheld

    by drz
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    Re: Evusheld

    My doctors have said it should be safe. The other question I had was if it would be effective for me if I was taking Avacopan and Azatioprine to control my GPA? But that risk has little downside so...
  19. Thread: Evusheld

    by drz
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    Re: Evusheld

    Does Evusheld have any risk of causing a flare of GPA like the vaccinations did for me? I don't dare get any boosters since the first two vaccinations seemed to cause a serious flare of my GPA that...
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    Re: Let's talk about "limited" Wegeners...

    I believe in the past "limited" was usually applied to GPA where there was no major organ involvement. The lungs would certainly have been a major organ.
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    Re: Let's talk about "limited" Wegeners...

    I think some experts like the wording of involvement instead of localized since involvement seems broader and leaves more room for acknowledging the disease might be or become active in other areas...
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    Re: Let's talk about "limited" Wegeners...

    I have seen references to a diagnosis of GPA with involvement of (list specific areas) eg lungs, kidneys, sinuses, etc.

    I think this a much better diagnosis as it gives more useful information...
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    Re: How are you doing ?

    i have been on Avacopan (Tavneos) over three months and might be having trouble with side effects. I spent the afternoon in our ER thinking I had a infection of my BAHA site and bladder infection. ...
  24. Thread: Forum activity

    by drz
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    Re: Forum activity

    I also joined in 2010 when i was in a nursing home working on recovery after months of treatment in hospitals after I was finally diagnosed with Wegeners Granulomatosis before it became more...
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    Re: Covid vaccins and WG

    Local doctors were the ones who surmised i was having a flare of GPA when i saw them for initial symptoms of the flare. They told me several other people had also experienced a relapse in other...
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