Medication

[B3ntl3y]

Hiya is there anybody on here taking Filigotinib was wondering what side effects you are feeling

Thanks

[oldtimer]

I've just looked in the search box for this and Jyseleca its Trade name and there are only two other posts both seeking information. Sorry it looks as if it's too new for much experience on here yet - but hopefully someone will come along.

It would be useful for others in the future if you could post more details of your own experience.

[B3ntl3y in reply to oldtimer]

Ok thanks for looking

[Blodynhaul]

Hi B3, really sorry I can't help you (yet), but I am due to start Filgotinib very soon (once Covid3 jab done + if cholesterol result ok). I'm pretty wary about starting it, after reading all i can about the risks & possible side effects, but as Oldtimer says below, it's so new there isn't much feedback. I posted on here before asking for feedback, but very little around.

Have you actually started it? If so, how long have you been on it? Are you having any adverse effects? is it working for your RA & if so how long did it take to start working? Sorry for all the questions, but longing to find out more! I'll certainly post feedback once I get going on it, but grateful for your experience so far. Go Well & Good Luck😊

[B3ntl3y in reply to Blodynhaul]

Morning thanks so much for your reply I have been on the drug for approximately 3 months now along with methotrexate have lost some hair this is due to methexate which I hate

My pain has improved but not to the extent I wanted it to . Maybe I expect too much my hands and feet still pain so much

I was told you can have Covid jab with it cos it’s not a live vaccine

It’s really weird always seem to say different things

How do I feel on it well I think it’s made my mood change don’t feel so low as I did B4 I have had a few skin tingles But no sign of anything else as yet My biggest concern is blood clots and cancer As I have had cancer last year it’s all worrying and yes think it’s a very new drug

Can we keep in touch please ?

[Blodynhaul in reply to B3ntl3y]

Thanks so much B3 (that sounds impersonal, but thinking of it in an endearing way ha ha). I'd be so grateful to keep in touch as it feels as we are both feeling as vulnerable & with as much dread as each other, though with hope of things working.

Your reply is very helpful, though as we know, everyone is different & has different responses, but still helps to have feedback. You're the only one I know on filgotinib so far. Glad to hear you have some improvement, though sad it's not a complete change for the better. It's still miserable when you still have all that chronic pain....Hope very much as the months go by it will help more. None of us know if initial improvement is the main thing to expect, or if over time things slowly improve.

Sorry to hear you're losing hair with the MTX. I will only be on filgotinib, not with MTX or any other DMARD or biologic, as MTX & leflunamide stopped working & adalimumab which I tried recently for over 3 months didn't work (produced antibodies against it). So not sure is filgotinib should/will work any differently with or without something like MTX with it or not....

Very sorry to hear of your recent cancer experience - yes can empathise with your great concern over that & clots & shingles etc. I'm so lucky not to have had cancer, but am suspecting my cholesterol test will come back high therefore delay me starting filgotinib. I've got so unfit, overweight, unable to have been doing cardio-vascular exercise etc for too long, that suspect my system is not strong in that way at all and having recurring high blood pressure and heart rate, so wary of the cardio-vascular risks & the RA this year has brought me to my knees so not starting in a strong place. The rheumy & GP don't say anything about those risks, though I'm asking about it, but not getting feedback yet. Not a nice situation at all for us to feel we're taking something that could directly give us horrid things like heart attacks/clots / cancer - especially if it's not helping the RA that much, but can't take nothing either as at wit's end with the RA . EVen if it does help the RA a lot, it's not good wondering in the background if it's bringing on those nasties is it!

'Glad' is the wrong word, but 'glad' we're in a similar boat. I'm currently getting worse daily again (after improving halfways on steroids) weaning off steroids now again & dreading the daily deterioration with all the pain & agony daily & nightly increasing and having to wait to start filgotinib etc. Can't win!

Truly hope things improve for you, will definitely keep in touch and hopefully we'll have positive things to say in the future. Really wish you could say that it's improved your RA in a huge way. What were you on before? seems they only give us these Jaks when other things haven't worked. Excuse me asking but what kind of cancer did you have & are you on medication for that too? (no need to answer if you'd rather not say).

Apologies for rambling on. I feel i have a 'friend' & soul-mate with this RA and filgotinib now -thank you. Wishing you all the very best for improvement with the RA and keeping those side effects at bay. O yes - are you having regular checks/blood tests etc on it? 😊💖👍

[B3ntl3y in reply to Blodynhaul]

Morning don’t apologise it was nice to hear about someone else’s experience I have hydro chlorinequine sorry spelt wrong Mtx and folic acid and how Filigotinib

Don’t bother with Naproxin as it never did anything

I just had a message from another person who is on it and it seems to be going well for them

It’s another dull day here

You have a good day and chat soon

[Blodynhaul in reply to B3ntl3y]

Thanks so much B3. Interesting to hear you're on MTX & HCQ too. Truly hope things get better again for you, will keep in touch. Having Filgotinib (FIL) being delivered tomorrow, but have to wait to see cholesterol result plus have COvid3 jab in 10 days' time & wait anther 2 weeks after that before able to start the FIL. Go Well

[Pastels]

Hi,

I’ve been on Filgotinib now for just over 2 months. I felt a bit dizzy on and off for a week or so but that passed once I started taking it at the same time each day. I’ve had a bit of sinusitis on and off for a couple of weeks which I’ve never had before so checking that out tomorrow with my GP.

My joints have responded so well I’m amazed, I can use my hands now to chop vegetables and I’m feeling the strength in my hands returning. The swelling in my knees is down and the pain in my elbows has gone!

I’m delighted now when I waken in the night and I’m not aching.

Fingers crossed the improvement continues and the side effects remain tolerable.

I had one blood test at four weeks which was ok and will have another in a month, if my cholesterol goes up I think I may have to start a statin.

Really hope Filgotinib works out for you….

[B3ntl3y in reply to Pastels]

Thanks for that info Inhave had no follow on checks As yet I have improved my elbow is better I have bad head aches and like you have dizziness not every day

Do you carry a medical alert card with you at all times does your drug get delivered to you

I’m so pleased it’s working for you

Thanks for replying as there are not many people who have heard of it

Take care

[Blodynhaul in reply to Pastels]

Great to hear from you too Pastels. Very interesting hearing of your experience so far on Filgotinib. You'll see on my messages with B3 here that I'm shortly going to be starting it. Wonderful to hear you have such improvement - especially hands as my hands are awful lie you & can't do basic things - so you've lifted my spirits! I know it's different for everyone, but you've provided hope! Will keep in touch - Go Welll & Thanks

[Pastels]

Hi,

I picked up 3 months supply from the hospital and will pick up another 3 months again from there.

Yes I carry a card my rheumatology nurse sent me one with an information leaflet.

Great Filgotinib is starting to work for you. Fingers crossed it continues.

[B3ntl3y in reply to Pastels]

🤞do you receive PIP I do if it improves do you thinkI should tell them ? It’s so difficult lots of people say no

[Hidden in reply to B3ntl3y]

Morning. I would wait and see how you go. Then think about it again, but going through the PIP descriptors. ‘Majority of the time’ applies, as does ‘Safely’. You may feel better, but still meet the parameters.

Also, I am really affected by the weather, so maybe keep a ‘function diary’ for a year and then inform them (or not) accordingly. Explain why you have done so if there is a change.. ie. monitoring your condition. Which is valid when your meds have changed, and also because weather/ cold/ damp affects us so much.

[B3ntl3y in reply to Hidden]

Thanks soMuch for reply yer think I will as today not as good as Saturday

[Pastels]

I don’t receive PIP and like Criplady said wait a good while before contacting them. I imagine we will have to wait quite a while to see how our medication is going to work out…..go well🙆🏽‍♀️

[B3ntl3y in reply to Pastels]

👍

[Blodynhaul in reply to Pastels]

Like you not claiming benefits, though in total pain and debilitation this year & should have, but also was thinking not to apply as was expecting to improve (but didn't) & would be tricky applying and cancelling & then applying again with the uncertainty of whether things would improve and stay good. So haven't applied, but will see how the filgotinib affects me first . Thanks again