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  1. Replies
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    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...
  2. Thread: Went to duke

    by Keith
    Replies
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    580

    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...
  3. Thread: Transplant

    by Keith
    Replies
    258
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    27,163

    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...
  4. Thread: Mds!!

    by Keith
    Replies
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    765

    Re: Mds!!

    Thankfully no. How about you?




    Sent from my iPhone using Tapatalk
  5. Thread: Mds!!

    by Keith
    Replies
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    765

    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.


    Sent from my iPhone using Tapatalk
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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!


    Sent from my iPhone using Tapatalk
  7. Thread: Mds!!

    by Keith
    Replies
    7
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    765

    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...
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    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...
  10. Thread: Sinus Congestion

    by Keith
    Replies
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    680

    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.
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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.
  13. Thread: Strict Dieting

    by Keith
    Replies
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    6,456

    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!


    Sent from my iPhone using Tapatalk
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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...
  18. Thread: Transplant

    by Keith
    Replies
    258
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    27,163

    Re: Transplant

    Hard news. Hopefully is misunderstanding.


    Sent from my iPhone using Tapatalk
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    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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    Re: Rituximab Assistance?

    Hi Masha, I am very satisfied with the medical staff. I wish I had got there a little sooner. I did have an issue last year getting my second infusion approved by insurance after I was released...
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    Re: Rituximab Assistance?

    Thank you Alysia, I sent the link to my doctor through the hospital portal. I am thankful to have insurance and an out of pocket maximum. However, it is very large maximum and would like to not max...
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    Rituximab Assistance?

    Has anyone applied for copay assistance from the rituxan web site?

    I started the form but hit a dead end when I answer I am not diagnosed with non Hodgkin lymphoma.

    My rhumy at Duke Medical...
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    Re: Head Cold Medicine?

    Thanks Pete!
  25. Replies
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    Head Cold Medicine?

    Hi folks,

    I've been fighting a head cold for a couple of days. No fever, mostly sneezing and drainage (a little stopped up this morning when waking). And now sinus headache ...

    I'm about a...
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