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  1. Re: 41 Years with Wegeners - Not a Relapse after all - Squamous Cell Carcinoma

    Hi Everyone!
    You are all amazing!! I am doing well. Because the tumor was so big (4.5 x 2.5cm), surgery was risky and carried a high morbidity rate. It would have been twelve hours and I would...
  2. Re: 41 Years with Wegeners - Not a Relapse after all - Squamous Cell Carcinoma

    Hi Anne and Gilders,
    Thank you for the notes! From what I have read both the long time immunosuppression and/or the chronic inflammation can make a Wegeners nose a nice spot for squamous cell...
  3. 41 Years with Wegeners - Not a Relapse after all - Squamous Cell Carcinoma

    Hi Everyone:

    Well I have not posted since September or so. For those that remember, I have had Wegeners for 41 years and have had a kidney transplant for 25, I had another one for 10 years before...
  4. Re: Wegeners/GPA for 41 years - Transplant for 25 - Having a Relapse

    Thank you for all of the kind words. I feel like I am slowly feeling better. Still on 30mg of Prednisone which seems to still be giving me some insomnia as well as some weight gain and just general...
  5. Re: Wegeners/GPA for 41 years - Transplant for 25 - Having a Relapse

    Hi Natty,
    Thanks for reaching out! I did have two infusions of Rituxan. I had some shortness of breath with the first one so they gave me extra steroids and benedryl and ran it over 9 hours - long...
  6. First Rituxan for Relapse - Check! Thanks everyone!

    Hi Everyone! :hug3:

    Thank you so much for the words of encouragement, well wishes, prayers and good vibes!!! Everything went well yesterday with my Rituxan infusion. It ended up taking 8.5...
  7. Re: Wegeners/GPA for 41 years - Transplant for 25 - Having a Relapse

    Hi Gilders,
    Congratulations on your transplant and thanks for the note! In the beginning the antirejection drug doses are always high and they take a few months to lower them to your baseline dose....
  8. Re: Wegeners/GPA for 41 years - Transplant for 25 - Having a Relapse

    Thank you Alysia for the welcome and kind words. I appreciate the reminder to drink a lot and the other details on the infusion. Many thanks also for the prayers - I feel them and they lift me up! ...
  9. Re: Wegeners/GPA for 41 years - Transplant for 25 - Having a Relapse

    Thank you Alysia for the welcome and kind words. I appreciate the reminder to drink a lot and the other details on the infusion. Many thanks also for the prayers - I feel them and they lift me up! ...
  10. Re: Wegeners/GPA for 41 years - Transplant for 25 - Having a Relapse

    Hi Andrew,
    Thank you so much for your message and kind words. They really give me a lot of comfort before my infusion tomorrow. I will prepare for the "feeling" of solumedrol. I think I remember...
  11. Re: Wegeners/GPA for 41 years - Transplant for 25 - Having a Relapse

    Thank you Masha for your prayers and words of encouragement. They mean a lot! Still counting the days (and hours) to my appointment at Hopkins Vasculitis Center next week and my infusion two days...
  12. Re: Wegeners/GPA for 41 years - Transplant for 25 - Having a Relapse

    Hi Pete,
    Thanks for your message! Good to hear words on encouragement on the Rituxan! I have only been doing nasal rinses to clear crusts for about the last 20 years. I started doing them to help...
  13. Wegeners/GPA for 41 years - Transplant for 25 - Having a Relapse

    Hi everyone,
    I am happy to have found this site and find all of you here. I am 54 and have had Wegeners for 41 years. I was originally misdiagnosed when I was 13 with Henoch Scholein Purpura. ...
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