Originally Posted by
hmcollin
I still have swelling in my eyes and inflammation in my sinuses and feel really tired some days. I have moved down to 9mg of prednisone daily and if I move down anymore I get more blood in my daily sinus rinses. I have bloodwork done monthly and no issues with lungs or kidneys and my bloodwork is stable. I guess my question is" Has anyone ever went to Rituxan without having kidney or lung involvement?"
My sinuses were the indicator that I was having a flare up last year. I never had any blood in sinuses until I started flaring up. My ENT finally walked up with me to the rheumy office and told the rheumy that he had to do something. So after a chest x-ray, we found more lesions. That was my start of RTX for maintenance. I'm still on 150mg of Azathioprine
Are you crusting up, or just bleeding? If there are crusts, that might be an indication that the wegs is still active in the sinuses. If no crusts, is it just dry up there? I don't have too much trouble with dry nose the way I irrigate my sinuses (3 liters of saline two times a day with a waterpik). Irrigating like I do also helps, even if there is crusting. When there was massive crusting, I used to run 3 liters, get a few out, and still felt like there were more ready to come out. So, I would make another 3 liter batch, rinse some more, and repeat if necessary.
In my opinion, with this disease, one 8 oz NeilMed bottle a day is not nearly enough rinsing if you have sinus involvement.
MikeG-2012
"You never know how strong you are until being strong is the only choice you have"
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