JYSELECA

[Lilahloo]

Is anybody on the latest medication for rheumatoid called JYSELECA. I am going to start in a few weeks after being on Benepali for a few years. Just wondered if anybody already on it.

[Lolabridge]

I think that’s the manufacturer’s brand name for Filgotinib, which is a JAK inhibitor medication for RA.

I’m not on it but others on this site may be. If you don’t get a response try reposting with the generic name.

You could also put Filgotinib into the search box as there may have been other posts about it. Also look on the main NRAS website for information.

Hope it works for you.

[Lilahloo in reply to Lolabridge]

Thank you

[nomoreheels]

I replied to Storms57 yesterday who was asking about another JAK inhibitor Rinvoq (upadacitinib). I also gave the NRAS link to JAK's if it's helpful at all nras.org.uk/resource/jak-in...

I hope it works well for you.

[Amnesiac3637]

Hi. Have been on Filgotinib (Jyseleca) for three days. This is my second Jak - the first one and very similar in mode of action - was Baricitinib. Fabulous drug for me, started working within a week and was brilliant for just under three years until I got Covid last February and it switched off.

In between I have had Tocilizumab which didn’t suit me at all so my rheumatologist has gone back to the Jaks as I responded so well. Astonishingly, the Filgotinib has, in three days, reduced the swelling in my hands and my pain level has reduced slightly already. Whoohoo! I have had RA for over 33 years and have all the drugs known to medical science and it looks like these latest ones are winners. The caveat is that not all drugs suit all sorts of people and what suits me may not suit you but really I hope you have the sort of result I’ve had. Never had any side effects from Baricitinib and so far so good with Jyselyca so keeping fingers, if not crossed, lined up for another few years of good!! Best of luck when you start 🤞😄

[Lilahloo in reply to Amnesiac3637]

Thank you looks like u may be okay. I also had rheumatoid for 21 years and the injections always worked but a nuisance they have to be kept in a fridge as always worrying about power cuts. Will start new meds soon x

[lucymead in reply to Lilahloo]

No need to worry about power cuts. Inform your electric company and they will put on the list for special terms. They will not cut you off for more than 1 hour with an hours notice. most of our meds are ok for this length of time. if not make sure you have freezer blocks in your freezer to supplement where you keep pens.

[Chocnbags]

I have been on Filgonib since January and could see a different in the first 10 days , it has changed my life no side effects at all ,I also take 15mg methotrexate,which will be reduce to 7.50 later this year if I am still doing well .

[Mmrr]

I have been on Filgotinib (Jyseleca) for 7 weeks. I began to notice a difference almost immediately in terms of reducing the heat in my soft tissues, I didn't really appreciate how much it was benefitting me until I had to stop it due to having an infection. I restarted again a few days ago.

[Evie3]

not heard of that one….will research now. Keep us informed how it goes.🤞

[Obibobi]

Hi, I have been on this drug for a few months, and swelling in joints has reduced, now minimal and overall feel much much better. I do not appear to have had any side effects either. The only other thing I would mention is that I have been advised to use a high factor sun protection as there is some suggestion of slightly increased risk of melanoma.

[Ellal]

Yes, I have been taking this drug since June 2022. I am fine on these meds and have no adverse side effects. My RA is well controlled.

[Blodynhaul]

Hi Lilahloo,

I've been on Jyseleca (Filgotinib) 13 months now. It's doing a great job controlling the RA. The RA was at its worst ever with me before that. I even felt a slight change during the first few days, though it took a few months back to where it was before.

To me it's a Miracle drug - but - I have developed several very debilitating chronic effects since starting it, not sure if due to the drug but I could be a combo of it & damage done when so ill & covid too perhaps. For a year-ish have had bad & funny heads; breathlessness, put on a load of weight, high BP, chronic cough (& have osteoarthritis & likely fibromyalgia too). In middle of tests etc. As you'll read, there are some higher risks of some nasties on these new JAKs & not a lot of trial results yet (though a recent one), so a bit unknown and time will tell! But in terms of RA it is certainly working for me!

GOOD LUCK!

[Lilahloo]

than you

[Bella59]

Hi i have been taking filgotinib 20mg (jyseleca) for five months now.I find this med the best so far it has helped my hands.I have had no side affects.I have been on barcitinib,tofacitinib and they did nothing.I tried several biologicals and dmards.I still take metojet 15mg pen also.Hope this med will help you too.

[Lilahloo in reply to Bella59]

thank you x

[Pastels]

Hi,

I’ve taken Filgotinib for about 18 months. No side effect and such a great result. I can so so much more now because of the reduction in joint inflammation and I have so much energy.

Really wish you all the best when you start!

[Doodlereggie]

I too am just starting this drug,but am anxious re side effects.keep looking at the box and putting off until tomorrow.what a coward! Keep me posted if you have started yet and if so how is it going please

[Hidden in reply to Doodlereggie]

I was diagnosed with ra in 2006 and after other treatments had become ineffective was put on filgotinib in February. Had huge reservations and very reluctant to start it. Told rheumatology nurses how unhappy I was to commence this drug as it’s so new and long term side effects aren’t known. Despite asking for an alternative this was to be the next step… my ra was getting progressively worse and flaring most of the time. I’m pleased to say after just a week on filgotinib I noticed some improvement, and so far my bloods are looking ok. 🤞🏻 It’s early days and I’m still in pain but things are moving in the right direction. Much more convenient to take a tablet each day rather than an injection too! Good luck with it!

[Doodlereggie in reply to Hidden]

thanks so much for your reply.I too am noticing a difference after only 6 tablets,not massive,but considering I cut down my sons clematis on Friday,and did some patchwork quilt sewing on machine Saturday,pain not what I would normally get after doing that!As I am nearly 80 I must admit I am more concerned with keeping day to day independence and mobility than long term effects.if I don’t have to stand at the gate to get any passer by to open jars etc I will be happy.I miss being able to do my garden,but have to accept that maybe my paper hanging days may be over!We are very lucky in uk to get these expensive drugs for free and I am eternally grateful to my lovely rheumy who has looked after me for the last 23 years.feeling optimistic at the moment as little side effects and no needles!Will post progress here.thanks.

[Hidden in reply to Doodlereggie]

Great to hear that you are making good progress so soon. I’m generally feeling a bit better all over and mentally too. I’m 57 and a brand new first time grandparent, so pain free mobility in my hands and knees is my priority. We are very lucky as you say, and I too am grateful for a great rheumatology team that look after me so well. My nurse said (when discussing my hesitation to take this drug) … ‘don’t always look on the negatives because actually this could be the very best thing you do!’ Let’s hope she’s right! Good luck and keep in touch. 🤞🏻

[Doodlereggie in reply to Hidden]

Promised to keep in touch so here is update.Still doing well on filgotinib,pain greatly improved ,and no side effects at all.Got my life back!However,as on 200mg which is not recommended for 80 year olds,rheumy is reducing to 100 mg later this month.Have been able to reduce preds to 3 mg down from many years on 5 mg,so that’s good.Am worried that pain will return on reduced dose,but will have to be positive and wait and see.My rheumy is so good,and I know will return to higher dose if necessary.It is so good to be able to garden again,to open jars,and use my iPad,what a miracle drug.Hope you are doing well on filgotinib,could you let me know please.keep well.

[Hidden in reply to Doodlereggie]

That’s brilliant! So pleased it’s working for you. It really is an amazing drug! 👍🏼