Jyseleca / FILGOTONIB

[Beggy]

Have only taken it for 3 weeks, then had to stop because of a bad cold. The improvements I had noticed , better mood, more energy, small improvements in dexterity, seem to have melted away. Do they come back when one starts up again? Has anyone any experience with this?

[Chocnbags]

Hello I have been on Filgoitnib since January and feel really well ,I would say it will start the improvement will come back when you start taking it again.I had to stop when I had Covid but did not feel any differently may e it has been in my system longer .it has been a wo der drug for me .

[Borrow56 in reply to Chocnbags]

So glad to read your report - I’m about to start this drug after all other ones not working for me. I dont know anyone in my area who has been on it but plenty on Methotrexate which unfortunately didn’t suit me at all. So it was good to hear your story.

[Blodynhaul in reply to Borrow56]

Hi Borrow56. I was in the same situation as you with MTX &Leflunamide having stopped working & going thru last year with RA totally out of control and biologics not working either. Started on Filgotinib in December and gradually since then have improved enormously in terms of the inflammation and agony - so agree Filgotinib/Jyseleca is a Miracle Drug! (far from 100% though as have osteo & apparently fibro, also having some side effects of Filgotinib - but in much better state than last year living in constant agony & not able to function. Good Luck with FIL - it is certainly helping my RA thank goodness!

[Beggy in reply to Chocnbags]

Thanks so much for your prompt reply. Gave me hope. Shall stay off jyseleca for a few more days as i dont want a chronic cough or cold.

[Blodynhaul]

Hi Beggy, I'm on Filgotinib/Jyseleca (FIL) since December but haven't stopped it at all so sorry can't help, but can say that - thank goodness - FIL is working for my RA after a truly dreadful year with it out of control. As I've not wished to even start returning to what I was - I've not stopped it at all! But the Rheumy said if I have any operations or a tooth out etc (anything where possibility of infection) to stop it temporarily (eg. for a week), but not done that. It took me months of slow improvement on it as was so bad starting on it. Notice you've only been on it 3 weeks. That's not long at all, so perhaps not surprising the improvements hadn't continued - took months slowly with me (sorry repeating) - but was worth it. GOOD LUCK!

[Beggy in reply to Blodynhaul]

Thanks for your update.. started back on jyseleca yesterday. Immediate response was having to sleep. Deep sleep,probably making up for poorer quality sleep due to cough and increased RA the last 12 days. Very hopeful after reading of your and others promising improvements after months of using it. How often do you or others have blood tests to see if there are adverse reactions. My rheumatologist hasnt told me anything. So glad this site exists.

[Blodynhaul in reply to Beggy]

All the best Beggy . So far I've had 3-monthly tests (been on it 8 months now). I'll let you know more when I know , but cholesterol is also a regular test together with the usual bloods.I am having some side effects on the drug (presuming must be that), but seeing how it goes, but seeing about some of them with GP this week. Go well!

[Beggy in reply to Blodynhaul]

Thanks for info on blood tests. Hope no serious changes for you. Still very tired after starting back on jyseleca, but hoping this will lessen soon . Some small improvements otherwise, mainly dexterity, opened a tonic water bottle yesterday without gadgets. Probably first time for 3 months. Coca cola is easier and have managed those a few times recently. These small steps forward mean so much most people have no idea, that`S why this site is so important. Good luck with your GP Beggy

[Blodynhaul in reply to Beggy]

Thanks Beggy, I'm having a few tests, though may not be related to the Jyseleca. Feel really confident that it will work well for you, slow improvements over a few months. It wasn't a sudden improvement, but when I look back - there's a massive improvement in inflammation and pain & being able to do stuff. Agree with you - all the little things mean SO much! Also agree this forum is brilliant for sharing all these relevant things & learning so much too. Really hope it works for you more and more!