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Thread: Thankful to find this forum

  1. #11
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    Default Re: Thankful to find this forum

    Welcome Dave

    Those two plus years must've been excruciating, especially the unknown. Knowing your condition certainly helps somewhat. As an aside, it is a sorry state that there are still medical personnel who can't diagnose properly. Breathing issues, joint pains, rashes..... Someone there should've at least entertained the possibility. Regardless, glad that you are under proper care now and feeling somewhat better.

    Godspeed to you, this is a great group!

    Sent from my moto z4 using Tapatalk

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  3. #12
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    Default Re: Thankful to find this forum

    Quote Originally Posted by me2 View Post
    Welcome to our hang out Dave. It's a great place for information and the company of people with similar experience. There has never been a better time to have Wegener's. (Gosh, that sounds like I am trying to encourage people to get WG. -- But wait, there's more...)
    Rituxan was a big step forward and now there is another medication soon to be available that many are thinking will be another revolution of treatment- Avacopan. Of course, being the new kid on the block , it is not a certainty. But a very good reason to hope.
    Some people , like myself , have used up the other options over the years and this new medication is even better news for US.
    My rheumatologist is expecting Avacopan to be really good news for all of us.
    Thanks,

    Our experience with avocopan was ok, but not great. He did experience flare ups still. Now, he is on a cousin of rituximab, the name slips my mind, and thank God, doing very well.

    I heard or saw I think that there can be various strains of GPA, and how one responds might depend on that. That's why many of us here have different cocktails of medicine and drugs. Seems the jury is still out on this and there is plenty more to learn.

    Godspeed to all

    Sent from my moto z4 using Tapatalk

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  5. #13
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    Default Re: Thankful to find this forum

    Thanks for the update. I agree. As a new treatment there is still a lot left to learn and be worked out. Thankfully we have this forum to share information. I have learned more here than I have from my doctors.

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