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Thread: Confirmed Diagnosis

  1. #11
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    You are in the best of places and with a top doctor. I am wishing you all the best with your treatments.

  2. #12
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    I had my first infusion of Rituximab today. Everyone at thr Cleveland Clinic worked as an efficient team. I cant sleep tonight. Maybe that is due to taking 30 mg of Prednisone and also having an injection of it at the start of the procedure. I'm also experiencing some pain in the elbow and shoulder that they used. This may or may not be related.

  3. #13
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    Wishing you well. Keep us posted please.

    Sent from my SM-G920V using Tapatalk

  4. #14
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    I had lung and ear involvement- dx on 8/1/16. I am treated in Boston. I started at 60 mg pred and ritux infusions every 4 months. I'm tapered down to 2.5 mg pred now and my disease is in remission I did catch bronchitis 4x and the flu once since Jan due to immune suppression. Wishing you the best!
    Trust in the Lord with all your heart
    and lean not on your own understanding;
    in all your ways submit to him,
    and he will make your paths straight.
    Proverbs 3: 5-6

  5. #15
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    I'm allergic to th sulfa in Bactrim so tomorrow I start taking a liquid antibiotic that costs $1000 for 3 months worth. Luckily insurance picks up $750 till I get in the donut hole.
    Good news. Headaches have caused me to take 1 Extra strength Tylenol every four hours for the last several months. I haven't had a bad enough headache all day. Also, I drove most of the way home from Cleveland to Chicago today. Last time, me eyes only let me drive a 1 hour shift.

  6. #16
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    Great news, John!! I hope your improvement continues!!
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

  7. #17
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    Quote Originally Posted by John S View Post
    I'm allergic to th sulfa in Bactrim so tomorrow I start taking a liquid antibiotic that costs $1000 for 3 months worth. Luckily insurance picks up $750 till I get in the donut hole.
    Good news. Headaches have caused me to take 1 Extra strength Tylenol every four hours for the last several months. I haven't had a bad enough headache all day. Also, I drove most of the way home from Cleveland to Chicago today. Last time, me eyes only let me drive a 1 hour shift.
    I get pentamadine inhalation treatment monthly instead since I am also allergic to sulfa and can't take Bactrim.
    Knowledge is power! Wisdom is using it to make good decisions!

  8. #18
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    Quote Originally Posted by drz View Post
    I get pentamadine inhalation treatment monthly instead since I am also allergic to sulfa and can't take Bactrim.
    It was either the antibiotic or the inhalation therapy. We want the freedom of travel for the Summer and the mothly procedure might have interfered.
    The antibiotic reminds me of yellow mustard or worse yet, infant poop.
    Last edited by John S; 04-27-2017 at 12:58 AM.

  9. #19
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    I want to emphasize again how nice everyone at Cleveland Clinic is. They kept asking what my birthday is, I think they are getting me something.......

  10. #20
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    Quote Originally Posted by John S View Post
    I want to emphasize again how nice everyone at Cleveland Clinic is. They kept asking what my birthday is, I think they are getting me something.......
    Probably better health...��
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

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