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...
Type: Posts; User: Kimberjoy
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...
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...
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...
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...
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...
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...
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....
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! ...
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! ...
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...
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...
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...
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. ...