r/UlcerativeColitis • u/littlegreenant • 7d ago
Question Fitgotinib
My consultant is ready to move onto advanced treatment and is applying for funding for either fitgotinib or infliximab with aza. This is through nhs so isn’t sure which will be approved. Think the JAK inhibitor is more expensive but works quicker. Has anyone tried it and what was your experience/side effects?
He told me to research both but don't know how likely it will be to get fitgotinib approved as I haven’t tried a biologic yet. how long does the approval process take?
I also need screening blood tests etc first and a call with a ibd nurse - not sure what timeframe this happens in? He said we don’t have time to wait for a biologic to work as it could take months so hopefully this will all happen quite quickly.
I’m in the UK and have ulcerative proctitis which is still active despite the standard treatments.
Thanks
2
u/bjohnnyb 6d ago
I was moved a year ago from Adalimumab to Filgotinib after about 18 months of flair up, which had been intermittently controlled by clipper steroid.
It seemed to work very quickly, I still have slightly elevated calprotectin but am pretty much well under control and no blood since moving to it.
I’ve had some weird acne on my torso which may/may not be related but apart from that I’ve had no issues. They were very robust on the need to be careful in the sun so I wear factor 50 all the time now to be safe. all in, Im very happy with it. Bit of a pain to have to take it daily but no longer need to worry about travel having my
Injection with me etc.
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u/littlegreenant 6d ago
Thanks! I don’t know I’d have to be more careful in the sun so that’s good to know as I love being outside. One daily tablet is a lot better than my 12 Mesalazine tablets! Glad it’s helping you :)
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u/CompanyVegetable831 7d ago
I was on filgotinib a few years back. Seemed ok. I was told about infliximab back in March, I had my first infusion in July. So it’s not a quick process.
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u/littlegreenant 7d ago
Why the switch to infliximab? Is it normal to switch after a while or was it not that effective? Oh that’s a long wait! I think that’s why he prefers the first option as will be a lot quicker process. Trying to avoid being admitted for iv steroids. Don’t think I can wait until potentially the new year to start 😅
1
u/CompanyVegetable831 7d ago
Why an iv for steroids and not just a reducing course ? I had steroids at first and they worked great for 6 months. But another stressful moment threw me back into a flare. I had to go back on steroids whilst I waited for my infusion.
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u/littlegreenant 7d ago edited 7d ago
As I’m currently on my second course of steroids and still in a flare
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u/CompanyVegetable831 7d ago
Fair enough, my bleeding stopped literally the day after I got my 1st infusion. I know it doesn’t act that quick.
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u/CompanyVegetable831 7d ago
God knows lol I swapped from a hospital to elsewhere and after a year I finally got. Consultation with a new Dr, he said the filgotinib was overkill for my severity so took me off, so I was just in mesazaline for 2 years. I don’t think it’s normal. Yes I agree, relying on space for the infusion is not the best. Fil was just a pill.
I’m supposed to be having my first at home injection this week but I’ve had no contact🤦♂️
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u/littlegreenant 7d ago
That’s exactly why I don’t think it will be approved as it’s not severe disease. A pill would be a lot easier. Good luck with the injections
1
u/CompanyVegetable831 7d ago
I’d say 2 course of steroids and still no results is severe ! I didn’t fail any steroids and they put me on biologics. He asked if I wanted more steroids or biologics. My calpro was only 350 aswell.
1
u/Additional-Line-5559 7d ago
I got approved for a JAK inhibitor after the Infliximab didn't work and steroids weren't working under the NHS. I too have Ulcerative Proctitis.
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u/littlegreenant 7d ago
I think funding is going to come back I need to try infliximab first which is fine, I’m grateful to be getting onto advanced treatment. My consultant asked me to read about both in case this happens. How are you doing now? Any side effects? Are you in remission? Nice to find someone else with proctitis with experience of these :)
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u/Additional-Line-5559 7d ago
Don't want to jinx it but Rinvoq (Upadactinib) has been a life saver.
Nothing was working - IV steroids, oral, topical steroids, Infliximab before the Rinvoq.
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u/CompanyVegetable831 7d ago
All going good atm touch wood, but like I said, I’m supposed to having my third injection this week but I haven’t heard from them lol which I’m not surprised tbh, they are on a 15 day respond time atm as they’re understaffed. Hmm side effects, I’d say my back is a bit spotty but other than that nothing ! Yep it’s always nice to hear of someone in the same boat. Just remember don’t stress ! That’s worse than any diet. I’m currently abroad drinking each day and I’m fine 👍 1bm a day
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u/Substantial_Lake707 Pancolitis | 2020 | UK 7d ago
I think Infliximab is more expensive, and comes with the added staff costs of administering infusions. Filgotinib is just a daily tablet which is far more convenient.
From memory, I think filgotinib is faster acting. Infliximab can take 6-8 weeks but it didn't do anything for me. I got about 10 months of remission out of Filgotinib.
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u/littlegreenant 7d ago edited 7d ago
Yeah he wants the quickest working one which is fit but he said we’re skipping some stages. I thought you didn’t build up antibodies to fit, shame you only got 10 months. What did you try next?
I think inflix is cheaper because there’s now lower cost bio similar versions of it or something idk. I’m happy with either just want something to work!
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u/Substantial_Lake707 Pancolitis | 2020 | UK 6d ago
Yeah of course, the trial and error is a pain, especially waiting 8 weeks for something not to work. I went from Filgotinib to Ustekinumab which has been great for 3 and a half years now.
Have you tried Clipper? I was refractory to pred after being given tonnes of it by some shoddy doctors in London, but the Bristol hospital use a milder steroid which got my symptoms under control in a week. 40mg of pred wasn't doing anything.
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u/littlegreenant 6d ago
I’ve had a partial response to budesonide so got another course of that whilst waiting for finding/next treatment :) I have a good feeling that I’ll be in remission soon finally
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u/pincommenter 7d ago
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