Has anyone tried Jyseleca?

[Anniebl24]

I am one of those people who suffers with grumbling RA but with low CRP never reaches the threshold for biologics and the DMARDs don’t do enough. I know Jyseleca has now been NICE approved but am interested to see if anyone was involved in the trials or has been prescribed it yet. Many thanks.

[oldtimer]

This is a newly approved JAK inhibitor Filgotinib. Presumably will have the same effects as other JAK inhibitors. Anyone been put on it yet?

[helixhelix in reply to oldtimer]

I would have thought that it would only be offered after other options have failed as not hugely different in effectiveness or price to other JAK inhibitors. I for one would be cautious of this one anyway:

thelancet.com/journals/lanr...

[oldtimer in reply to helixhelix]

Perhaps they will re-market it for contraception in men!

[nomoreheels]

One of the latest of the JAK inhibitors. I'm hopeful as it's the first to be considered for moderate disease. I empathise with you, I’ve been told yes, I can see if I can progress onto bDMARDs more than once then to be told no, my inflammatory markers rarely rise either. MTX isn't doing what it did after a long time on it yet 3 other DMARDs have failed me. Answer is reduce MTX & remain on maintenance dose prednisolone, which I changed to from another steroid in order to do a long taper safely. Initiated by my previous Rheumy, who was never replaced & nobody will take the bull by the horns & initiate changes of any sort. Sorry for the rant!

I hope things improve for you whichever the treatment.

[Neonkittie17 in reply to nomoreheels]

Oh gosh I’m sorry you’re having to go through this NMH. I hope you can politely persist and keep reminding them you need to do something. I hope you can be considered for JAKs and the same for Annie. It isn’t fair if the rheumys are looking at low inflammatory markers and you still have active disease whatever the blood results are. Hope a new rheumy is appointed too. x

[nomoreheels in reply to Neonkittie17]

Thanks J. Don't mind me. It's more frustrating than anything. One says one thing... you know how it goes. It's that I can't increase my MTX without bother, I’ve tried often enough so it's not like I’ve not done my part & I’d rather not be on steroids interminably either. We say here that bloods aren't the whole story, it's convincing the profs! x

[Neonkittie17 in reply to nomoreheels]

Hope you can convince. They need to listen you .. to us! One solution doesn’t suit everyone as we know. 😑

[nomoreheels in reply to Neonkittie17]

Thanks. 😚

[lynndemedicis in reply to nomoreheels]

What is your maintenance dose of MTX and Prednisone?

[nomoreheels in reply to lynndemedicis]

The maintenance dose is the prednisolone which actually can vary according to need so not true maintenance. I can increase/reduce it as needed within reason. I have managed to reduce down to 2mg no lower. My current MTX dose is 17.5mg subcut. Is this helpful Lynn? Are you having problems?

[oldtimer in reply to nomoreheels]

In response to your rant, I have exactly the same problem that the rheumatologist keeps telling me that I'm poorly controlled on the present regime (azathioprine plus prednisolone) but I'm not eligible for biologics. Although my inflamed joint count is high, my inflammatory markers barely rise. It's infuriating to be restricted by the rationing system, especially when my sister (who is treated in Geneva) is on her third biologic and has fewer problems than I do.

[nomoreheels in reply to oldtimer]

I didn’t realise you were in a similar position! I take it you've seen off other DMARDs too?

Your reply promoted me to take a look at the Swiss guidelines, which I didn't realise differed but it's there in black & white, as it would be given your sister's experience. Stringent monitoring, so very different to my experience in the UK. They don't mess about with initial treatment either, you're straight onto MTX injections, no having to try tablets first & go through rubbish side effects to warrant changing as is often the case here (though not my experience in Spain, new Consultant decided on injections for me without specific need other than an increase in dose warranted it, I guess to eliminate or reduce severity of side effects possibly).

Further... Indication for biologics Ongoing stringent monitoring of RA disease activity and progression, as recommended above, allows appropriate adaptation of DMARD and biologics treatment. The authors of this consensus agree that if low disease activity or remission (defined for practical purposes as at least a DAS28 ≤3.2) has not been achieved within 3 months with the initial conventional DMARD therapy, that the use of a biologic agent is recommended as the likelihood of reaching a low disease activity status, after initial failure of MTX, using subsequent conventional DMARDs is low researchgate.net/publicatio...

The SSR clearly don't agree that the ACR/EULEAR guideline's standard of care in attempting disease remission is adequate.

If it wasn't for cost of living I’d quite happy reside in Geneva, one of my favourite cities. Definitely on my list of places to return to.

[Anniebl24]

This is a Jak inhibitor specifically for moderate disease for those who do not reach the 5.1 DAS score needed for biologics.

[nomoreheels in reply to Anniebl24]

Interesting. Can I ask, are you able to lay your hands on this info, provide a link at all? As you may have read in my reply I’m being pushed from pillar to post so would like some clarification in order to prepare my case so to speak!

[Neonkittie17 in reply to Anniebl24]

I have read of this one too Annie.

[Neonkittie17 in reply to Neonkittie17]

Can’t recall where but I’ll try look tomorrow.

[Anniebl24]

pharmaphorum.com/news/nice-... is a link

[nomoreheels in reply to Anniebl24]

I had found the NICE guidance in the meantime but thank you.

The link you gave isn't working, I don't think you left a space between the end of the address & you starting typing Here is a link. Not to worry, I copied it to another tab. pharmaphorum.com/news/nice-...

[Orangebox]

I am in this RA category also - regular flares in feet, wrists, random finger joints and a constant swollen inner ankle, and yet my blood markers all look fine. I’m not fine, and not in stable state to fine find work again. Reviewing options but not sure if RA reviews in U.K. will resume as pre-COVID. I’m also researching my the alternative to DMARDS Sulp & HQC.

[handless]

I have been taking Jyseleca for three months with no effect. I am considered a complicated patient…

[Hidden]

Not of use to you, but this was me for years 😭. I am on 25mg Mtx & 4 sulfasalazine a day (2 with bfast 2 with tea). Are you on top doses of DMARDS yet??

What helped me enormously was getting rid of stress* (I had untold DWP and work drama) and cutting out gluten. I also moved cities to be back near family, started on Amitriptyline and stopped taking naproxen and diclofenac. I also take daily vitamins and supplements as I think I was missing some trace elements of something and take an additional B12.

Like you I had flares constantly but my CRP was low. This was before the biologics criteria change…

Now I am fine though after stopping work and pacing and resting properly. But I am alone and don’t have a mortgage. I also think Covid was useful as I could ‘reset’.