Posted 6/20/2021 2:16 PM (GMT -6)
Thanks for your replies. Suzy-Q, thanks for letting me know that your husband's recovery after starting Xeljanz wasn't linear, and that he stayed on 20mg. That gives me hope!
I'm down to 4 or 5 bms a day on average, with the occasional good day of 2 bms a day. Weirdly the recent good days have coincided with commuting to an office rather than working from home so I'm trying to figure out what I did differently, which is making me suspect a few things - tomatoes, raspberries, dairy, supplements, caffeine etc
Sara14 - good luck on your quest for a solution, and surgery research. I'm keeping an open mind about whether / when I might have surgery. I've only failed one biologic (Humira) so I'll probably try Entyvio if Xeljanz fails, before I opt for surgery. If I could be sure that post surgery I'd be able to get on with my life with minimal inconvenience I'd probably choose surgery, but unfortunately we can't be sure of the outcome.
Limey - thanks for your feedback. I keep meaning to book a hearing test. I must get round to it now that the UC is a bit more under control. Then I'll know whether the tinnitus is related to hearing loss. Just before developing tinnitus I said to someone I'd rather have UC than tinnitus. I'm scared of tinnitus because you can't escape it :-/