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Type: Posts; User: drz

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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...
  2. 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...
  3. 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.
  5. 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...
  6. 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. ...
  11. 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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    Re: Covid vaccins and WG

    I had been vaccinated with two doses before I got my RTX treatment and did develop antibodies from the vaccination. But my doctor says there is not point in getting a booster shot now since i would...
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    Re: New medication approved for ANCA vasculitis.

    i have been on the Tavneos for three weeks. It does cause some upset stomach and diarrhea so far but often such initial symptoms decrease as the body adjusts to the new meds. it can cause elevation...
  15. Thread: Ongoing Pain

    by drz
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    Re: Ongoing Pain

    You can have residual effects of GPA even when doctors consider you in a drug induced remission. My doctors defined remission as an tolerable adjustment that did not warrant any new additional...
  16. Re: Anyone here receive Evusheld for covid prevention?

    Do any of these have a risk of causing a flare of GPA?
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    Re: New medication approved for ANCA vasculitis.

    After several more phone calls and discussion the company changed their position and said it does not matter if the drug gets frozen and that it should be OK to take. It just seems strange though...
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    Re: New old guy on the block

    Have you considered getting a Uro-lift to help with retention?
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    Re: New medication approved for ANCA vasculitis. Tavneos avacopan

    I was approved to get the Tavneos (avacopan)drug free for a year but have not been able to start it. The bottle says the med should be stored at 68 to 77 but excursions from 59 to 86 are permitted....
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    Re: Timing of Covid vaccine/boosters and rituximab

    There are new meds to treat Omicron but they will be in short supply. There are efforts increase production of these drugs as they rush to make them available as they will be critical for us elderly...
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    Re: Confirmed Diagnosis

    I also have a sulfa allergy so they give me the half of Bactrim that is not sulfa Trimethoprim and Pentamadine inhalant treatment every 4 weeks. I think the term limited or mild is intended to...
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    Re: Covid vaccins and WG

    I read some studies suggest it might not help much with Omicron version which is now the dominant source of infections. It may not be as deadly or severe but when it results in a massive increase in...
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    Re: New medication approved for ANCA vasculitis.

    Most people only get RTX once or twice a year so it would cost $40000 year. Tavenos for $17000 is probably for a month or $204000 year or best cases if it is 90 day supply, probably unlikely since...
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    Re: New medication approved for ANCA vasculitis.

    Is anyone on this drug? It has been approved for me to try but is very expensive even with my insurance coverage for most of the cost but there apparently is a program to help us retired people on...
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    Re: Can Covid vaccine cause flare up?

    My Moderna vaccinations early this year caused my first serious flare in 10 years. The treatment of high dosage of prednisone and RTX and GPA flare caused a lot of damage to my body. I am reluctant...
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