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Type: Posts; User: annekat

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    Re: Coronavirus and GPA

    Hi, drz. I'm doing OK here and may say more later when I can get logged in on my computer. I am on my phone, on Tapatalk, and realize I've been missing some threads.
    I did get your private message...
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    Re: Coronavirus and GPA

    Hi, Alysia, I'm not reading the forum the best way so entirely missed this thread until very recently and it will take some time to get through it. So need to stop using Tapatalk and get back on...
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    Re: Specialist in or near KY

    My pcp doctor and dentist have both told me that my WG meds contribute to a dry mouth. This causes more dental decay, for one thing. Pcp says drinking lots of water helps, and I admit I drink more...
  4. Thread: Transplant

    by annekat
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    Re: Transplant

    Pete, great news about the kidney numbers! Not so great about the other two tests, especially the liver. I hope this is somehow temporary and they can figure out the cause. Thanks for keeping us...
  5. Re: Tinnitus, how can I cope with this symptom?

    I do think there's a trend towards docs prescribing lower pred doses or maybe faster tapers, which are two different things. I was started on 50mg in 2011, not 60 as you were, and then tapered to 40...
  6. Re: Tinnitus, how can I cope with this symptom?

    Hi, Solose,
    I have some tinnitus but not what I'd call severe. I think it's possible it will either improve or you'll get used to it. What struck me about your post was that you said you'd been on...
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    Re: GPA -> Scleritis and Rituxan anyone?

    Hi, Shankxonline ... I'm forgetting your first name. I have never taken RTX, but I will say I haven't heard much about it leading to cancer.. Not saying it can't, but it's more commonly talked about...
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    Re: VIF with my husband who has GPA

    Fingers and toes are crossed. I'm sorry that you have to live with such uncertainty in your employment situation. But I'm happy that you are looking forward to a baby and the joy that will bring. By...
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    Re: VIF with my husband who has GPA

    Sorry to hear this and wish I could be of help. But wanted you to know someone had read your post. It sounds like you are doing a specialized job that not everyone would want to do, so maybe your...
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    Re: Possible Wegner's but still in limbo

    I was on Cytoxan for about 8 months and then was switched to methotrexate, which I've been on for about 7 years, and it has been successful mainly as a maintenence med. But I have heard of it being...
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    Re: Possible Wegner's but still in limbo

    I also had hearing loss before diagnosis and treatment and had a good and a bad ear, but it dragged on much longer than yours has, so I think there is hope. Feb. 4 is coming right up, and I hope the...
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    Re: Possible Wegner's but still in limbo

    I guess every situation is different; my nasal biopsy, which proved my dx, came about through a series of events. I had been going to a well-respected ENT in my town for a series of atypical, for me,...
  13. Thread: Avacopan

    by annekat
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    Re: Avacopan

    Hi, Pete,
    I posted the article on one of the GPA Facebook groups and got a big reaction, with lots of interest and speculation (as I posted above). Some of them seemed to have some knowledge of it,...
  14. Thread: Avacopan

    by annekat
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    Re: Avacopan

    Hi, Masha,
    Yes, Dr. David Jayne was mentioned in the article posted by Pete at the beginning of this thread. But he has been mentioned many times on this forum over the years, at least since 2011...
  15. Thread: Avacopan

    by annekat
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    Re: Avacopan

    I suppose it could depend on severity of disease, some might still need RTX, but maybe people who haven't needed RTX (like me) could still get by without it. Pure speculation. I posted the article on...
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    Re: Happy birthday to me

    Happy Birthday, Masha! And thank you. I will be 68 in August of this year. I don't know where the time went. I have a friend whose father-in-law had WG/GPA and lived to be 82. I think we could live...
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    Re: New old guy on the block

    Thanks for the annual update, Pete. You were dx'd and began treatment a couple of months before I was in 2011. I looked back over the thread from the beginning, and found good posts from people who...
  18. Re: 41 Years with Wegeners - Not a Relapse after all - Squamous Cell Carcinoma

    Thanks, Kim. It's so true than everyone's story is a little different, or as in your case, a lot different. You've done us a great service by illustrating the possibility of cancer, which we may...
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    Re: Happy Healthy New Year

    I understand the fires are still increasing and are worse than ever. It was brave of you to drive in and around the fires, not that you had much choice, since it is your job. I guess being a truck...
  20. Re: shankxonline - My path to identify GPA and overcome it

    For some people, MTX is enough to serve as an initial treatment and to treat a flare. I was started on Cytoxan because I had lung involvement. I think I could have been taken off it a few months...
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    Re: What is the smallest dose of Rituxan?

    Alysia, I went back and read that entire thread and found it very interesting, though complicated and with a few differences in viewpoint. I have to correct myself on what I wrote above about ...
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    Re: What is the smallest dose of Rituxan?

    You have such a good memory, Alysia, and I guess I do, too. But you always follow it up by finding the thread where this is discussed. Thank you. I will take a look so that next time I'm more sure of...
  23. Thread: Transplant

    by annekat
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    32,576

    Re: Transplant

    Pete, I am also very thankful for your update, as we hadn't heard from you for awhile. I was beginning to worry. I was going to ask Alysia, because she knows everything! ha, ha. I'm very happy to...
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    Re: What is the smallest dose of Rituxan?

    I used Bactrim for a few years after dx in 2011, starting when I was taking Cytoxan. I was reading about it a lot on the forum, too. I also remember reading that in addition to being a prophylactic...
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    Re: Happy Healthy New Year

    I wish the very same for you, Masha, and for everyone here!

    Sent from my MotoE2(4G-LTE) using Tapatalk
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