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Type: Posts; User: annekat

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    Re: Diagnosed yesterday

    Hi, Jen, sorry for the delay. I've been having re-registration problems and can only use tapatalk, on my phone, which is becoming difficult due to it's old age. Time for a replacement.
    FYI, the...
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    Re: Diagnosed yesterday

    Jen,
    I don't think you should be too concerned about the new nasal symptoms as long as your doc knows about them. They are very common symptoms among us, and by themselves are considered one of the...
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    Re: Diagnosed yesterday

    Hi, Jen. I'm glad you found us. I'm in Olympia, WA, a ways up the freeway from you. I lived in Portland for 8 years as a kid, where my dad taught, did research, and was an administrator at OHSU. That...
  4. Re: 41 Years with Wegeners - Not a Relapse after all - Squamous Cell Carcinoma

    Congrats, Kim, on getting the tumor zapped with chemo, and thanks for the update! Also thanks for sharing pics of yourself. You are cute, especially in the green wig! Good to know your loved ones are...
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    Re: Coronavirus and GPA

    Looks like someone re-registered me, as I was having trouble with that. Thank you. Now I can like and reply to people's posts. It will take some time to get caught up. Have been letting myself get...
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    Re: Coronavirus and GPA

    Great video! He used the Melitta style coffee filter, which I think would be better than the basket style I was visualizing. The shape fits the face and it is double thickness for more filtering, as...
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    Re: Happy Birthdays Thread

    Happy Birthday, Michelle! I hope it is very special for you. With love,
    Anne

    Sent from my MotoE2(4G-LTE) using Tapatalk
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    Re: Happy Birthdays Thread

    Happy Birthday, Alysia! I know it was last week, on Easter. With all the virus stuff going on, I forgot, and I'm sorry. I hope you are staying well and safe.
    Anne

    Sent from my MotoE2(4G-LTE)...
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    Re: Happy Birthdays Thread

    Happy Birthday, Kirk!

    Sent from my MotoE2(4G-LTE) using Tapatalk
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    Re: New to forum, not new to GPA

    Don't be too hard on yourself. We all need to give ourselves some slack. Getting a diagnosis of something most people haven't heard of is confusing and troubling. You were younger than most when you...
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    Re: Coronavirus and GPA

    I know a couple of sewing artists who aren't currently allowed to sell at our farmers market who are making well fitted masks out of double layers of beautiful fabrics, so they are reversible. At...
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    Re: New to forum, not new to GPA

    Welcome, Tyledres,

    I'm so glad you joined and posted. Don't worry about remembering things or rambling in getting your experience and issues across. I am usually the same way. Everyone's...
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    Re: Coronavirus and GPA

    Well, Kirk, if you are out and about and make it this far, I will give you a couple of masks. And I'm fine on firewood, in case you wondered. Still a bit chilly when the sun goes behind the hill.
    We...
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    Re: Coronavirus and GPA

    Good to hear from you, Kirk. Not even to the grocery store with mask and other precautions? I guess not. I'm sorry you are so vulnerable.

    I have a bunch of N95 masks. They are a few years old but...
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    Re: Coronavirus and GPA

    Yes, I felt you screaming. I have known about this for awhile and consider him a lifesaver for those of us diagnosed before 2011, when Rituxin became approved and available for use. He and an...
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    Re: Coronavirus and GPA

    Good jokes, Masha. We need a lot of humor right now. You had me going for a minute about the bike and the Wild Turkey.
    I wonder the same things you do. Seems all we can do is play it by ear, one day...
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    Re: Coronavirus and GPA

    Hi, Masha, and thanks for asking. Yes, the virus has had a huge effect, completely out of my control. After 2.5 months of the expected slow business on Saturdays at the Olympia Farmers Market, I was...
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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...
  21. 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...
  22. 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...
  23. 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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