Xeljanz and tinnitus?

Has anyone else developed tinnitus after starting Xeljanz? I suspect the tinnitus is linked to the Xeljanz in some way (maybe thicker / stickier blood or higher blood pressure) but I can't come off the drug right now to see if the tinnitus goes away, because I'll just flare up again.

I've been on Xeljanz for 5 weeks now, and after a positive response initially I'm still mildly flaring, with all of the inconvenience and uncertainty that this brings. As I've only got 3 more weeks left on the higher dose I'm already starting to wonder 'what next'? because if the higher dose doesn't get me into remission I guess the flare will increase when the dose reduces.

Time will tell, but I'm tired of having to organise my life around access to toilets. I'm tired of asking my friends to choose venues that have more than one toilet, and worrying about how big the toilet queue might get in the venue, and whether I'll need to get my 'Can't Wait' card out to queue jump then go through the embarrassment of sitting on the loo for ages while the queue builds up outside. I'm tired of the pain and the uncertainty of whether I can get through my commute without bowel urgency, or whether I'll have bowel urgency at work and have to run out of an external meeting, or stink the toilet out with a colleague queueing outside.

Anyway, back to my question, if anyone's developed tinnitus soon after starting Xeljanz please let me know!

So sorry to hear about the tinnitus. My husband had tinnitus prior to starting Xeljanz. There is a school of "treatment" focused on cognitive behavior therapy -- but I don't know how successful it is. He sleeps with a fan on and avoids loud noises. He saw an audiologist and was given musicians ear plugs years ago to wear when in loud places.

Unless you are super concerned about the risks, and assuming your GI will be on board for it (since you need that for your insurance drug coverage) you are not obligated to reduce your dose of Xeljanz (though maybe that might help with the tinnitus). My husband's been on the 20 mg for over 5 years and because it's working he doesn't want to mess with it. If the Xeljanz is working at 20 mg, then stay on it at 20 mg and give it a chance. Every patient is different and the 8 week marker is random based on statistics within a small number of patients is my guess.

When husband started the Xeljanz, he knew it was working right away because he just felt better and symptoms improved. about 3 weeks in symptoms started up again, with all the worry, but by about 5 weeks, they were stopping and I believe by 2 months no more major UC symptoms.

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 :-/