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Type: Posts; User: annekat

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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,...
  4. 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,...
  5. 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...
  6. 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...
  9. 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...
  11. 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...
  14. Thread: Transplant

    by annekat
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    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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    Re: What is the smallest dose of Rituxan?

    What you say about Cytoxan makes sense. I think a few people have gone over their lifetime dose with no issues, yet. Which doesn't make it ideal, of course. But it might be no worse, or better, than...
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    Re: What is the smallest dose of Rituxan?

    Not that I "Like" what you are going through and dealing with, Kirk, but just glad you are sharing, and hoping you get some answers. In fact, I am very unhappy about what this crappy disease is doing...
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    Re: just starting meds

    Brad, my first symptom was a severe antibiotic resistant ear infection in both ears. That is a pretty common one among those with sinus involvement, though some don't get that. WG/GPA has a way of...
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    Re: My journey so far

    I'm sorry to have missed this thread earlier somehow. Karen, how patient you have been on the long road towards a diagnosis. It's true that not all rheumatologists and pulmonologists know much about...
  21. Thread: Avacopan

    by annekat
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    Re: Avacopan

    Pete, this sounds like a dream come true. I wonder if patients like me, and maybe you, who are not in "acute" Vasculitis, will be able to use it. Will be interested in knowing what your doc in...
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    Re: just starting meds

    Dr. Seo at Johns Hopkins is highly recommended as a GPA doc, and I can think of 3 Weggies I know who are extremely happy with him. I think there are more. And someone on here recently mentioned being...
  23. Re: Journey to being diagnosed, treated, and already first flare up

    Welcome Onirin and Mnjet . I came in late to this thread, and excellent responses have been given. What's most noteworthy from all the posts including yours is the wide variation in different...
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    Re: Happy Birthdays Thread

    Nice to hear from you, Jeto. I'm glad to hear, it sounds like you are doing pretty well. I haven't seen Bing on the forum for awhile, but maybe he will see this. All the best to you and your family....
  25. Thread: Liver Spots

    by annekat
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    Re: Liver Spots

    I'm 67 and I have them, too. Sometimes they seem to appear overnight. I wouldn't worry much.


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