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  1. Replies
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    Re: Managing symptoms and treatment for a flare

    The rise and fall of symptoms can be so mysterious with this illness. I hope yours mysteriously get better soon- I know I've had it happen myself.
    I did read about a guy years ago whose GPA...
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    Re: Managing symptoms and treatment for a flare

    Having suffered GERD and inflammation I found something that helps deal with the throat and eosophagus irritation. I use the Neil med salt/soda packets with a cup of water to rinse my sinus. I found...
  3. Re: Slowing the progression of multiple sclerosis by following a strict diet.

    I have several decades of personal stories of trying to treat WG with diet and natural treatments- all failures unfortunately. Perhaps others have had success.
    I recently heard of some people...
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    Re: How many subglottic stenosis surgeries?

    I read somewhere that the average number of dilations for stenosis is about 3 . I'm not sure how they came up with this number or who it applies to but as luck would have it that IS the number of...
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    Re: Gave Up on Facebook Groups

    Good to see you here Larry. This is a great community of knowlegable and supportive people. I myself have never used Facebook group for WG.
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    Re: Happy Birthdays Thread

    Thank you Alysia. Very kind of you to think of me.
  7. Thread: Avacopan

    by me2
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    Re: Avacopan

    Hopefully they will work on another study that will establish it for maintenance use- of course that would take a while. If it could be a substitute for steroids in broader usage though I'm thinking...
  8. Thread: Donations

    by me2
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    Re: Donations

    Showing the Boss a little love. Thanks Andrew for all that you do for us.
  9. Re: How was my Health before coming down with GPA Vascular

    I don't know if there is a common thread but I was very healthy when I developed GPA 42 years ago. There are way better treatments available now so I'm thinking life expectancy and quality of life...
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    Re: Coronavirus and GPA

    I think it is saying this: Patients with inflammatory rheumatic diseases (IRD) may be more likely to acquire severe pneumonia due to COVID-19, according to a study published in the Journal of...
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    Re: New Here - Possible GPA with Nasal involvement

    If it is possible it might be good to call the ENT's office and ask to talk to the ENT's nurse and explain your situation and why you need to be seen soon. I found I'm somehow able to get...
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    Re: Covid vaccins and WG

    My doctor has talked to me about possibly doing immunoglobulin therapy with me at some point in the future. I'm not sure what criteria he is looking for beyond the fact that I am extremely immune...
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    Re: New Here - Possible GPA with Nasal involvement

    My heart goes out to you Rae. I know how it feels to be overwhelmed by serious symptoms and a lack of proper response to them. I don't know if it's an option for you but over here there is a 'new to...
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    Re: Possible GPA - nasal deformity

    You are a very perceptive person. Thanks I'm whacked out on high dose steroids right now and I find myself exaggerating everything and I can't help it. But better times are just around the corner...
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    Re: Possible GPA - nasal deformity

    Rae82 - I know I commented on the very smallest aspect of your situation and something probably of no concern -especially right now for you. It was the only part of your situation that I thought I...
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    Re: Possible GPA - nasal deformity

    I'm no doctor and no expert but I have seen a lot of people with saddle nose in person and this doesn't look like it. It looks more like deviated septum - which is what I myself have. It can lead to...
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    Re: New Here - Possible GPA with Nasal involvement

    Thanks Peter. Things are really amazing for me in the reflux department. I literally thank god almost daily that the problem is gone and I am enjoying perfect non/reflux health.
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    Re: New Here - Possible GPA with Nasal involvement

    Great advice Peter. I might have been one of the reflux people you are thinking of here. I had it for many many months and saw a bunch of doctors and did a bunch of tests. I had one doctor look at me...
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    Re: Ongoing Sinus Issues

    John yours is quite the story. Thanks for telling us about it and congratulations on finding your path to improved health.
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    Re: Ongoing Sinus Issues

    Even with the very best doc another opinion can be helpful sometimes. I think you are on track to eventually get this figured out and get the right treatment to put you back in good shape. You are...
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    Re: Ongoing Sinus Issues

    Well, you are in very, very good hands with Dr Villa Forte and at the top facility. I actually talked with her once at the airport after a Wegener's symposium she spoke at. I kinda felt guilty...
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    Re: Ongoing Sinus Issues

    Boy , Wegener's is tough to figure out even when it's the only thing going on. I can appreciate your complications making it even harder.
    Were you ever able to be seen in Cleveland? Did you get a...
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    Re: Biosimilar for rituximab

    The horse dose of steroids given with the Ruxience is keeping you awake- not fun but normal. Once it wears off you should be able to catch up on sleep. It causes me palpitations too and they should...
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    Re: Biosimilar for rituximab

    Very true. Before Rituxan cam along I was on Cytoxan 40 years ago. After two years I was declared in remission and then was drug free for 20 years. Because there was no internet I had no idea how...
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    Re: New Here - Possible GPA with Nasal involvement

    The journal is a great suggestion. It doesn't need to be elaborate either just brief notes help a lot later when memory starts to fade on how things happened.
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