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Jyseleca (filgotinib)

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Ulcerative Colitis
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HollyAndIvy
New Member
Joined : Feb 2022
Posts : 6
Posted 10/18/2022 2:46 AM (GMT -8)
Hello friends of healing well,

Thinking of trying Jyseleca for UC flare.
Has anyone tried this? If so, did you have improvement? Good or bad, I'd be really interested to hear.

At the moment I'm on Asacolon 8 x 800mg. (4 in the morning and 4 in the evening). 4g enema Salofalk. Very difficult to retain. I can't eat much as I'II just live in the bathroom. So it's mostly roast chicken and grilled salmon.
This all got bad when I got cystitis awhile back. I then had to do two courses of antibiotics to clear this up.
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CCinPA
Veteran Member
Joined : Dec 2014
Posts : 2518
Posted 10/18/2022 5:00 AM (GMT -8)
This is the first I have heard of Jyseleca and had to look it up. Seems to be a jak inhibitor that was recently approved in the UK and Europe for UC, but hasn't been approved yet in the U.S.

Some here have had great success with Xeljanz which is also a jak inhibitor.

Given the antibiotic use, I have to ask -- were you tested for c-diff?
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poopydoop
Veteran Member
Joined : Dec 2018
Posts : 1799
Posted 10/18/2022 5:48 AM (GMT -8)
Hi, just wanted to point out that the UK is still part of Europe 😁

Apart from that, jyseleca is similar to rinvoq (upadacitinib) in that they are both JAK-1 inhibitors.

Xeljanz, the first JAK-inhibitor to be licensed for UC, inhibits both JAK-1 and JAK-3.
In being more targeted, it is probable that jyseleca and rinvoq are both safer and more effective than xeljanz. More data on this will become available in time.

That being said, all 3 drugs are particularly effective in patients who have failed to respond to biologics and other treatments. Since most people who take these drugs do so as a "last resort" it's hard to know whether these drugs are more effective for all UC patients or whether it's to do with blocking a particular immune pathway that's important in a subtype of UC.

Either way, yes many of us have had great success on these drugs, often when we had run out of other medical options. And they work FAST as well (can usually notice changes in the first week)

Good luck.
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HollyAndIvy
New Member
Joined : Feb 2022
Posts : 6
Posted 10/18/2022 7:05 AM (GMT -8)
Thanks for the replies.
Going for bloods tests today. The reports take two weeks to come back...aggghhh, too long to wait.

Steroids are not working and Infliximab failed. Vedolizumab was next, but there's only a 60% chance it may be effective. So going with the Jyseleca, one tablet a day sounds good to me. Most of the reviews I read are from RA people. As this drug is more targeted for them. They all had good gradual responses.

No I haven't been tested for c.diff. I'II mostly likely have to do a calprotein, I'II ask for c.diff to be included on the test report.

Btw, the UK is on it's own and not part of European decision making.
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Sara14
Veteran Member
Joined : Mar 2007
Posts : 7644
Posted 10/18/2022 10:43 AM (GMT -8)
I'm on Xeljanz and so is my boyfriend. I tried it after the other meds didn't work or failed. My boyfriend tried it as his first medication after mesalamine (and a course of steroids). Neither of us have side effects. I've been in remission over a year and he has been for over 2.5 years. I know it's not the exact same med but hopefully that helps a little. Hope it works for you! One pill a day is awesome. So much better than infusions, too.

Two weeks to wait on bloodwork is a lot--sorry the steroids are not working. How long have you been on them and at what dosage? And yes, request a stool sample test for c diff.
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poopydoop
Veteran Member
Joined : Dec 2018
Posts : 1799
Posted 10/18/2022 11:58 AM (GMT -8)
I know that, I am from the UK and live in various EU countries. The UK is still part of the continent of Europe.
It's just that it no longer subscribes to the EMA since it left the EU.
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HollyAndIvy
New Member
Joined : Feb 2022
Posts : 6
Posted 10/18/2022 1:06 PM (GMT -8)
Thanks Sara. Gives me hope🤞
I'm not on steroids at the moment. Just being careful with food.
I've done two courses of IV steroids in the passed and never got good. Always blood for months after. Just being careful with diet and doing supplements helped. Never full remission though.


Well they were able to speed the blood reports up a little. So I'II know next Mon/Tues. X-ray done too. So if Jyseleca doesn't work out. I'II try Vedolizumab.
My IBD nurse said I should know in a few days, if Jyseleca was going to work in my system. Amazing if it did and only a few days to know. Not like weeks with other meds.
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CCinPA
Veteran Member
Joined : Dec 2014
Posts : 2518
Posted 10/18/2022 3:26 PM (GMT -8)
You probably should be tested for c-diff before changing meds. If you do have c-diff changing meds isn't going to do anything and could possibly even make things worse. Check with your doc as soon as you can.
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Sara14
Veteran Member
Joined : Mar 2007
Posts : 7644
Posted 10/19/2022 8:16 AM (GMT -8)
Good luck! I'm not sure what your nurse meant about knowing in days. Some people see results in days but most it takes a little longer than that (I'm only speaking of Xeljanz but assuming it's the same). It took me 9 weeks to be completely symptom-free. Just don't want you to give up if you don't feel better in a few days.
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Flowermay45
Regular Member
Joined : Nov 2020
Posts : 27
Posted 11/8/2022 7:00 AM (GMT -8)
Hey! I am just about to start this - how are you getting on? Freaking out about the blood clot side effect 😭
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ks1905
Veteran Member
Joined : Sep 2005
Posts : 6358
Posted 11/8/2022 8:14 AM (GMT -8)
I’m sure the blood clot risk is minimal but I would seriously keep up with your Covid vaccine schedule. As an IBD patient we are already at higher risk for blood clots and Covid causes blood clots so it’s something that I vigilant about trying to prevent.
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Sara14
Veteran Member
Joined : Mar 2007
Posts : 7644
Posted 11/10/2022 1:01 PM (GMT -8)
You can increase your mesalamine too. I noticed you're not on the max dose. Did you start the Jyseleca yet?
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HollyAndIvy
New Member
Joined : Feb 2022
Posts : 6
Posted 12/2/2022 8:02 AM (GMT -8)
Hi Sara14, Yes 5 weeks on this now. Only seen a slight improvement. It's similar to biologics, so can take up to 12 weeks to kick in. I've mild headaches from it. I take CBD oil for this. Started Cortiment at the same time.

Met up with my doctor the other day.
He did an ultra sound on the colon and there's bad inflammation in the rectum and sigmoid 5cm deep was some of the ulcers.
Now on steroids, Cortiment, Salofalk 3g granules and Fortisip compact protein drinks x 2. My weight is very low. Down to 44k (my usual would have been 51k) and I'm 156cm.
Would love to be able to hang onto the Salofalk 4g enema. Anyone got any tips for this? I've tried doing it on my left side and lying on the bed for a bit. I only last a few mins.

Flowermay45 - did you start it yet? How are you doing? Hope it's working out for you. I'm trying not to look too much into side effects. I really need this to work. I'm at the end of my rope with this illness. Christmas is coming and biggest and best present I could get is remission.
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Flowermay45
Regular Member
Joined : Nov 2020
Posts : 27
Posted 12/3/2022 9:44 AM (GMT -8)
Hey Holly! Glad you’re not getting too many side effects & hopeful for you to get into remission!

I’m about to hit 4 weeks, not really sure it’s working for me. Thought I saw improvements last week but then my rectum is feeling irritated and inflamed again. Proctitis is my main issue. Only going once or twice a day but when I do it’s with bloody mucus.

Going to give it a few more weeks then ask for a scope.

I don’t have much luck with rectal meds. They can make me worse. Going to try pred suppositories next week & see what happens.

Been flaring since May, ended up in hospital with it, sent home tapering pred with filgotinib. Currently on 25mg pred so that could be also masking a lot !!!
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Flowermay45
Regular Member
Joined : Nov 2020
Posts : 27
Posted 12/3/2022 9:46 AM (GMT -8)
Also I am totally fed up with the flare up. Hard to keep positive. Sending you a virtual hug. You’re not alone 😊 x
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HollyAndIvy
New Member
Joined : Feb 2022
Posts : 6
Posted 12/16/2022 2:44 PM (GMT -8)
Thank you Sara!
Hope you’re keeping well.
How is the filgotinib working for you?

I had a scope today. Mayo 2 in the rectum and Mayo 3 sigmoid 30cm.
So I was admitted for I’ve steroids.
Now staring stelara infusions on Monday.
This has to be the one.. I hope.
My weight is still dropping how is yours?
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HollyAndIvy
New Member
Joined : Feb 2022
Posts : 6
Posted 12/16/2022 6:30 PM (GMT -8)
My last msg was meant for Flowermay45
Mixed up the names.

I’m just devastated to be back in hospital. I hope stelara works🤞
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FlowersGal
Veteran Member
Joined : Feb 2017
Posts : 1631
Posted 12/17/2022 10:20 AM (GMT -8)
I’m so sorry! Being in the hospital sucks at any time but especially during holiday season. Hoping you feel better soon!
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CCinPA
Veteran Member
Joined : Dec 2014
Posts : 2518
Posted 12/17/2022 11:24 PM (GMT -8)
Sorry that you are in the hospital. Hope you feel better soon!

Tips for retaining enemas -- warm the bottle in hot water for a minute or so and slowly squeeze the air out of the bottle before inserting.
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tonito
Regular Member
Joined : Jul 2011
Posts : 58
Posted 12/23/2022 10:27 PM (GMT -8)
Sorry you are in the hospital, Holly. I hate being there.

I would definitely try Rinvoq. From what I have read, there was disappointment on the effectiveness of Filgotinib (Jyseleca). Rinvoq has worked great for me and many others.

I hope you can lead the hospital soon.
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Sara14
Veteran Member
Joined : Mar 2007
Posts : 7644
Posted 1/9/2023 11:00 AM (GMT -8)
How are you now? Have you tried Xeljanz?
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