Upadacitinib clinical trial for UC

Hugo18 said...
Barnsbury,
I wanted to know how your Rinvoq is going. I was doing great on Xeljanz and now am in a large flair. Because xeljanz worked so well for me I thought upadacitinib could really work well.
Thanks for a update.
Hugo18

What dose are you on? And how long was you on it before you flared again?

I saw a change pretty quickly. In a week I saw quite an improvement. By Week 8, the difference was huge.

I was on 15mg daily but that dose wasnt enough to get off steroids due to years of dependency. So, I was moved to 30mg and have stayed on that dose. Yes it is approved for RA in the UK.

Yes, hopefully it will work quickly. Though having a read online, this drug and your last one are fairly similar. Fingers crossed it will get you into remission.

Did you get any sides with Xeljanz ?

45mg is not an option on the clinical trial.

15mg is the standard dose. If you flare badly, you can be moved to 30mg. No other options. That said, I believe I was on 45mg for the first 8 weeks of the trial but that period was placebo controlled and was blinded, so nobody knows for sure. But, I just felt so much better in those 8 weeks even though I was horribly sick with UC. In the 2nd arm of the trial I was moved to a lower dose and things were not quite as good. Shame, there is no option but as in most clinical trials. these things are always strictly controlled.

Yes, I had a few. Which is why I knew for sure I got the real drug and not the dummy placebo.

On 45mg dose - First few days, huge headache. Worst I have ever experienced. But disappeared by Day 3. Nightmares were real bad. Strangely, I also had nightmares in the first few months of being on Vedolizumab. By around the 3 month mark, these had also disappeared.

On 30mg dose - I am getting constant warts and veruccas. I treat them, but then they always come back. Annoying. But, I will take them over UC any day. No contest. Few more mouth ulcers than usual. Longer for cuts and insect bites to heal. It also interferes with my sleep, in that it can keep me awake. So, I ALWAYS take it first thing in the morning.

The biggest one is raised cholesterol. This was a shocker to me, as I eat healthily and go running. It is in range but right at the top end of the scale. I was told by my GI's that is common side effect of this drug. Which is why they always measure it on all hospital visits.

Other than that, there aren't any other side effects, and mine are fairly minor I guess. And nothing compared to Pred sides.

Good Luck Hugo. I really hope this works for you.

Do keep me updated with how things go.

I'm also curious! Good luck 🍀🍀

Best of luck to you Hugo. I hope you get some quick and long lasting relief. Keeping UC under control with meds feels like being on borrowed time. There are a lot more drugs available then when my husband was first diagnosed, and hopefully someday there will be one that works for every individual. Don’t forget Stelara if this one doesn’t work.

Thought I would give a quick post 2 week update. No response. My GI isn’t really surprised that the Rinvoq isn’t working as it is the same mechanism as xeljanz. He wants to give it another two weeks and try Stelera. His view is that since remicade worked so well for me originally and I am steroid refractive it could be effective.
It is frustrating but I do have hope considering I have twice been able to come out of nasty flares. I am also realistic that I don’t have a lot of other ammo in a the arsenal.

My doctor took me off of Xeljanz due to more recent studies and a slightly higher rate of malignancy. So, I am now on Stelara. I was scared to go off Xeljanz because it was working so well for me. Colonoscopy didn't show full remission, but I felt 99% better. I took my second dose of Stelara about 5 weeks ago and so far, so good. I'm not sure if I'm quite as controlled as I was on Xeljanz, but with Stelara and my daily fiber intake, It's very tolerable. I hope you start to get results on upadacitinib.