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Rinvoq has stopped working

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Ulcerative Colitis
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Posted 6/27/2023 1:09 PM (GMT 0)
I have been on Rinvoq for a year now, it worked very fast getting me into remission and all was well until this week. I am having a full-on flare after all this time, I am wondering if anyone else here has had this happen. This will be my first flare on Rinvoq, I am also wondering what other drugs my GI can give me while on Rinvoq or if he will have me stop taking it. Jak inhibitors are a whole different approach to UC, this flare will probably be different than in the past, hopefully short lived.
Any advice is appreciates, thanks.
Posted 6/27/2023 4:51 PM (GMT 0)
I am sorry you're experiencing a flare. I am hoping it's short-lived. Do you take any other meds with rinvoq? Can you use enemas?
Posted 6/27/2023 5:00 PM (GMT 0)
I saw on a post about a week ago that you had recently stopped mesalamine and were doing great. Maybe restart the mesalamine and see if that helps.
Posted 6/27/2023 5:21 PM (GMT 0)
I'm sorry you are going thru this.

I have no experience with this medication so I don't have alot to add.

I do know that even on Remicade I still have occasional flares.

Clo
Posted 6/27/2023 5:55 PM (GMT 0)
Oh no! I know you have been doing so well! This makes me so sad.

What happened? Was it just bleeding and diarrhea all of a sudden or was it a slow build up of stuff you thought maybe was just food related? I am curious.

I know steroids and rinvoq are often used together but my doctor does not prescribe it with imuran, 6 mp or methotrexate. Not sure if other doctors do this though.

If you are on 30 mg, are you able to bump up to 45 mg for a short time? I am new to the drug so I am not sure what is allowed.
Posted 6/27/2023 7:45 PM (GMT 0)
Thanks so much! It's been a slow build, with me historically it starts as morning blood and the runs but I can still go about my day, then a few days later I cannot leave the house, to being hospitalized all within a few weeks. I'm hoping with Rinvoq things will not decline so quickly. Yes, I was glad to stop all other drugs but have no problem restarting mesalamine. I have an appointment with my GI doc in 2 weeks, I'm hoping I can make it that long. When I say I can't leave the house, I mean like 20-30 bms a day, massive blood loss, 50-75 lbs weight loss, dizziness and a brain fog that is no joke. Flares are very extreme for me, always have been.
Posted 6/27/2023 7:55 PM (GMT 0)
I'm so sorry. Have you considered going to hospital? The symptoms you just mentioned are very severe. At hospital they can check for C. Diff. Prayers your way.
Posted 7/5/2023 7:53 PM (GMT 0)
Update: this flare seems to be calming down. This was nowhere as bad as in the past. The only thing that has changed is the medication, if this is what flares are like on Rinvoq, I can handle it no sweat!
Also, I am on the lowest dose of this med, we can always increase the dose which from what I've read is very effective.
Thanks for letting me vent and your replies.
Posted 7/5/2023 10:42 PM (GMT 0)
Good to know that there’s hope with mild flares to get them under control without having to switch meds.
Posted 7/17/2023 10:49 AM (GMT 0)
Glad to know you are feeling better beatuc!
Did you change anything or did it just calm down on its own?
Are you on 15 mg?
Iam also on 15 mg Rinvoq. What I like about it is that it gives us this extra feeling of security because we can technically increase the dose to 30 mg and ? (as bananagirl mentioned) perhaps going back on 45 mg for a while?
Posted 7/17/2023 11:49 PM (GMT 0)
Thanks for your thoughts. Yes I am still at 15mg, saving 30 for if things go off the rails. I am still on a razors edge but it seems to be not getting out of control. I am still concerned that this drug can kill me, I think they'll have new meds in a few years, this is just a band aid. It sucks being in a semi-flare for months, maybe having a major flare and getting it over with is better?
Posted 7/18/2023 10:46 AM (GMT 0)
UGH!!! I really hate 'hearing' that anyone is having a flare while on Rinvoq. Like you beat..., I've been doing so great on Rinvoq that I don't take any other UC medications. I've been on 30mg. since last Feb. with NO flares are even symptoms. I do hope you continue to improve and get back into FULL remission soon.
Posted 7/18/2023 12:36 PM (GMT 0)
I started to flare on xeljanz when I reduced the dose from (2×) 10mg to 5mg (this was years ago). I added salofalk (mesalazine) 4g enemas and that has kept me in remission ever since. I do have the option to increase to 10mg in reserve but my doctor prefers to avoid that because of safety concerns.
Posted 7/20/2023 4:30 AM (GMT 0)
I have a stressful and hectic lifestyle so I’m no measuring stick for lots of meds, but i went from 45 rinvoq to 30 (45 shocked my colitis sort of speak and wowed me for first week.. that’s it, then weaned off its effect, but i couldn't be on 45 for ever so i had to decrease to 30) so anyway my flare continued for months and months and months.. I started mesalamine by mouth, no change, enemas of cortisone and mesalamine had a short lived effect, then dr gave me uceris. Uceris finally gave me some control.
For me, Rinvoq helps with keeping bleeding at bay - i give it credit for that - but that’s about it. does not help with inflammation, urgency, frequency, mucus etc
Posted 7/20/2023 11:51 AM (GMT 0)
Sounds like you need to try a different drug ☹️
Posted 7/23/2023 2:44 PM (GMT 0)
You could try a second biologic like Stelera and see if the two combined could help?
Posted 8/1/2023 12:56 PM (GMT 0)
2 biologics is a no go because it's too much immune suppression. The danger of serious infection is real.
Rinvoq 15mg seems to have kept things barely under control. It's a tricky situation bc if the doctor orders the next larger dose (from 15 to 30) it's a pain with the insurance to go back. I am at more risk of blood clots than most, I've had them 4 times so far. So, we decided to have a 30 day supply of samples in reserve in case this flare gets bad.
Posted 8/1/2023 3:26 PM (GMT 0)
rinvoq is not a biologic...

I believe there are some trials with dual therapy (2 biologics, or 1 biologic + 1 JAK inhibitor)

Not sure the immunosuppression is any worse than taking a biologic together with imuran/6mp or MTX, which many do.
Posted 8/1/2023 4:39 PM (GMT 0)
@poopydoop, we have two members on here that are on one of the JAK's & a biologic & both are in remission & doing great.
Posted 8/1/2023 8:14 PM (GMT 0)
"RINVOQ is the brand name for upadacitinib, a biologic drug belonging to a group of medications known as Janus kinase (JAK) inhibitors"

Rinvoq is a biologic and considered as such by the medical community. JAK inhibitors are a class of drugs within the biologic classification of drugs.
Posted 8/1/2023 9:15 PM (GMT 0)
Rinvoq is NOT a biologic... it is a jak inhibitor.

Biologics are, as the name suggests, derived from organic material. They are large molecules with complex structure that makes
them expensive to manufacture. They generally need to be delivered by infusion or injection.

Jak inhibitors are small molecule drugs produced entirely synthetically and administered as tablets.
Posted 8/1/2023 10:12 PM (GMT 0)
It's not a big deal but just Google "is Rinvoq a biologic?" the internet and the Rinvoq website itself say yes
Posted 8/1/2023 10:44 PM (GMT 0)
There are several websites that do refer to it as a biologic, but technically, they're wrong.

Poopydoop is correct.

I looked at the Rinvoq website and I can't find where they refer to it as a biologic.
Posted 8/1/2023 10:52 PM (GMT 0)
Not sure what you were seeing, but when I googled it I got this:
Popular FAQ
Is Rinvoq a biologic?
Rinvoq is an oral drug classified as a Janus kinase (JAK) inhibitor but is not a biologic. It is approved to treat rheumatoid arthritis, psoriatic arthritis, ulcerative colitis, Crohn's disease, ankylosing spondylitis, active non-radiographic axial spondyloarthritis, and atopic dermatitis (eczema) when other treatments are not effective. JAK inhibitors help regulate an overactive immune system and interfere with signals in the body that are thought to cause inflammation.
https://www.drugs.com/rinvoq.html

I couldn't find anything on Rinvoq's website that said it was a biologic. Could you share what you found? I always thought that it was not considered to be a biologic -- it's a separate class of drugs, but I am open to new info if you could share.
Posted 8/1/2023 11:00 PM (GMT 0)
Here's another link:
https://www.goodrx.com/classes/jak-inhibitors/are-jak-inhibitors-biologics

Actually a lot of sites came up saying that it isn't a biologic. I did see one site that said it is a biologic - Clara Health. But I didn't see anything on the Rinvoq website so if you can share what you found that would be interesting to read.
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