filgotinib feedback please

[Doodlereggie]

this is new to me so hope I get it right!I have just been given 3 months supply of filgotinib and keep putting off taking it,as fearful of side effects,as I am prone to expect the worst!I am not concerned about long term effects as nearly 80.have been injecting with Benepali for 9 months but not worked.have bad pain in wrists and now in feet,so am very lucky not all over!have been put forward by my rheumatologist for possible wrist surgery and due to see surgeon in April.feel I should give filgotinib a good chance before going down that route as a bit concerned re surgery.

Just need some reassurance from others who have been there as you seem to have such a fount of knowledge between you.It gets very lonely when you have no one to talk to about concerns,as never want to worry my son and his wife.very grateful for any reassurance,Thankyou.

[KittyJ]

Until you get some people on it answering, if you put that into the search box and filter for NRAS then all the past posts about it will come up 😊

[Doodlereggie in reply to KittyJ]

Thankyou have done that and got lots of info.will know in future !

[Green230461]

New to me hope it works 🌻

[Doodlereggie in reply to Green230461]

thanks for reply.will post progress.feel much more positive now!

[Green230461 in reply to Doodlereggie]

My theory over the years is this- try anything they suggest might help. Blood work tells them quickly if it is not and then you can move on! Best of luck. ☘️

[Chocnbags]

I have been taking Filgoitnib since January 21 ,no side effects at all ,I feel great to be honest my swelling was reduced in 10 days I have full movement in my joints all going well .

[Doodlereggie in reply to Chocnbags]

Thankyou so much for reassurance.did not expect it to show results so quickly,that is a bonus.now have the confidence to start next week.will report progress on my feed.once again many thanks!

[Chocnbags in reply to Doodlereggie]

Please let me know how you have got on ,I find it fantastic my Rhummy is going to reduce my Methotrexate to 7.5mg as I have been doing so well .

[Doodlereggie in reply to Chocnbags]

will let you know how I get on.looking forward to starting now,fears subsided!

[oldtimer2]

Just entered it into the search box and there are lots of previous posts. I always feel that new things can't be any worse than what's gone before.....sometimes they are, sometimes much better!

Look at the NRAS treatment pages too for sensible information: nras.org.uk/resource/drugs-...

[Pastels]

I have been taking Filgotinib now for 18months and have had amazing results. Huge reduction in inflammation and increased energy. Slight light head at the start but within a day or two it went and I’ve had no other side effects. Im so pleased I started taking it.

All the best

[Doodlereggie in reply to Pastels]

that is so encouraging.do you take morning or night and with food or not.will post progress next week.was going to start this week,but daughter in laws dad died yesterday and heavy week sleeping at sons and dog sitting so need to be on top form!not putting off really!!

[Pastels in reply to Doodlereggie]

usually after my breakfast but only to be in a routine and not forget! I’ve taken it on an empty stomach with no problems too. I felt at the start that taking it at the same time was important just to keep the blood levels ok . Little bit of light headyness at the start but soon went. So pleased with how it’s working I stopped when I had covid for three weeks and the RA came back swollen joints hot painful tired. Re started Filgotinib and it took about 3weeks to get control again.

Very best of luck to you, so worth giving it a go.

[Blodynhaul]

Hi Doodle, sorry about your situation. Filgotinib is working very well for me (been on it 20 months), but I do have some chronic side effects - BUT - most people I've seen on this forum don't have side effects and feel very well. So - rather pot luck! But I'd recommend it for controlling the RA anyway - so worth a try! GOOD LUCK. It's horrid when you can't talk to people about these things, but I've found this forum excellent for that😁💖👍 Go well X

[Doodlereggie]

Thankyou so much for replies.Saw rheumy yesterday after 4 months on filgotinib and crp gone from 78 to 7 ! I could not believe it.don’t knowingly have any side effects ,but as am nearly 80 not sure if have odd things what causes them!He wants me to reduce preds from 5 to 3 over next couple of months,as been on for over 20 years ,so must be gradual.Good luck to you.Keep me posted.x