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  1. Thread: Avacopan

    by Keith
    Replies
    15
    Views
    349

    Re: Avacopan

    From Wikipedia (because I didnít know)


    An orphan drug is a pharmaceutical agent developed to treat medical conditions which, because they are so rare, would not be profitable to produce without...
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    Re: Happy Healthy New Year

    Peace and love to all from NC!
  3. Re: How many got the Wegners or GPA Dx without a bx?

    Hi Brad, looking back it seems docs may have insisted I get kidney BX which confirmed DX. Not certain as was in a fog. If so, this delayed treatment which contributed to ongoing nephropathy in my...
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    Re: just starting meds

    I see Dr Ryan Jessee at Duke South clinic. Get infusions there as well. It is much nicer than the hospital, easier to access and free parking. Iím pretty sure Dr Jessee studied under Dr Allen. He...
  5. Re: Journey to being diagnosed, treated, and already first flare up

    You will be in good hands at Duke.




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  6. Replies
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    635

    Re: Imuran Side Effects

    Hi Mattieus,

    I am up to 100 MG / day of Azathioprine / Imuran. It may be increased further if my doc and I decide to halt the RTX infusions. I've had the infusions for 2 years since DX. January...
  7. Thread: Went to duke

    by Keith
    Replies
    10
    Views
    769

    Re: Went to duke

    Masha,

    Great to hear you had great results. I believe Dr. Allen was one of the the 'supervisors' of my Doctor who was in residency for a year or so of my diagnosis. I saw him last week and he...
  8. Thread: Transplant

    by Keith
    Replies
    266
    Views
    30,268

    Re: Transplant

    I am an IT leader in a plant. We ALWAYS have work to do on holidays and take turns providing coverage. What I do is much less important than improving health or saving lives. Sad state of your...
  9. Thread: Mds!!

    by Keith
    Replies
    7
    Views
    859

    Re: Mds!!

    Thankfully no. How about you?




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  10. Thread: Mds!!

    by Keith
    Replies
    7
    Views
    859

    Re: Mds!!

    Thanks

    My doc had told me not to worry, they had many others on higher doses with no issues but I didnít have a feeling of the magnitude.


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    Re: Advise on migrating to Australia

    Hi Prabu,

    I have no experience on Australia but want to wish you well on your decision and health.

    It is good to have options!


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  12. Thread: Mds!!

    by Keith
    Replies
    7
    Views
    859

    Re: Mds!!

    Iíve not heard of that but Iím less than 2 years in. Watching though as Iíve been on imuran for maybe 20 months. 100 mg now as Iím almost off of prednisone.



    Sent from my iPhone using...
  13. Replies
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    2,398

    Re: Just diagnosed from Queensland Australia

    Hi Rob, welcome!

    Your experience was very similar to mine. I was 49 and had been very healthy up to that point.

    I agree your doctors did an outstanding job of diagnosing. It gives me hope...
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    Re: Nice NYTimes article on chronic disease

    In regards to Prednisone - I was on 2.5 mg for 2 months. I started to wean further (with rhuemy's agreement) by mixing in 2 mg every other day or so (it was somewhat mathematical). Anyway ... after...
  15. Thread: Sinus Congestion

    by Keith
    Replies
    9
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    751

    Re: Sinus Congestion

    I use Flonase several times a week, depending on when my ear starts stopping up. I need to investigate possible issues from long term use.
  16. Replies
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    Re: 2019 International Vasculitis Symposium

    Appears admission and transportation could qualify as an HSA expense. But not lodging and meals.

    Why is medical conference admission/transportation eligible?
    However, as opposed to the cost of...
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    Re: Trials Advocan? CRSPR CAS9? Cure?

    Love your username, one of my favorites.

    Interesting post, plausible. Going to check out the links.
  18. Thread: Strict Dieting

    by Keith
    Replies
    51
    Views
    7,338

    Re: Strict Dieting

    I dropped 35 lbs with Keto diet in 2 or 3 months which was great. Unfortunately, my cholesterol elevated much higher than a year prior. The doc gave me 60 days to correct with diet and test again. ...
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    Re: Newly dx 11/28/18 and scared!

    "monitor your urine at home" - I remember something about this in my initial research months ago and forgot about it. I should get on this forum more often.

    Luckily I have appointment with rheum...
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    Re: Newly dx 11/28/18 and scared!

    Hi toolman, thanks for sharing your story. It sounds like you are in good hands. I had fewer symptoms than you but it was absolutely the hardest thing I've been though. I don't want to imagine...
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    Re: Newly diagnosed-happy to be here!

    Hi Linda, welcome to the group!


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    Re: Rituxan maintenance

    I had the initial 4 round RTX, then 2 rounds 6 months later, then 1 round 6 months later. I expect to be on every 6 months for a couple of years.

    Our only misstep was weaning off pred too...
  23. Thread: Transplant

    by Keith
    Replies
    266
    Views
    30,268

    Re: Transplant

    Hard news. Hopefully is misunderstanding.


    Sent from my iPhone using Tapatalk
  24. Replies
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    2,278

    Re: I love someone with Wegeners

    Hi Lynette,

    Welcome to the forum! My wife found this forum soon after I was diagnosed almost a year ago. The forum has been extremely informative in my search for answers and understanding. ...
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    Re: Rituximab Assistance?

    morningsunshine,

    You are correct, I was on the wrong site. Thank you so much!
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