Filgotinib

[Doodlereggie]

hi everyone

Just need a bit of reassurance from others on filgotinib.Been a real life changer so far after nearly 5 months.Virtually pain free,and able to do so much more.However,last night did not take my tablet,as stomach upset a bit,meaning to take it during the night.Slept right through and therefore did not take it.Like turning the clock back this morning,could hardly dress myself,as hands so painful.Can this happen so quickly if you miss a tablet,or is it just a flare out of nowhere and just a coincidence.At least it shows me how far I have come in last 5 months,but would rather not have had a reminder!Have taken it now and couple of paracetamol and will have a rest day today.Thanks for any help from anyone who have missed a tablet.

[helixhelix]

JAKs have a different way of working than other RA drugs, and block cytokines directly. They work much more quickly, and so it’s very possible that missing a dose will be felt pretty immediately.

[Doodlereggie in reply to helixhelix]

Thanks for reply.Feel much better now,I think I may have been overdoing the gardening a bit,and that was really the reason!

[Amnesiac3637]

Hi Doodlereggie

Have been on Filgotinib for three months and like you it’s made a huge difference and I felt very well almost as soon as I started it. Unfortunately, it has knocked off my lymphocytes so have had to come off it for the last two weeks - but it’s only in the last three days I’m noticing the difference in the swelling in my hands, my energy level dropping and more pain.

I know it leaves the body very quickly but I’m not sure you’d have had the problem of a flare because you missed one tablet as you’d still have had residual drug in your bloodstream. It sounds like a coincidental pain flare, maybe because you were having a problem with your stomach. Of course, we’re all different and you may have a different tolerance. Good luck, hope youget back to normal dosing and Filgotinib keeps working for you.

[Doodlereggie in reply to Amnesiac3637]

Back to normal now Thankyou.Such a brilliant drug you forget what you felt like before,may be a good thing to be reminded sometimes,as do tend to overdo it!I cleared my sons front drive yesterday of all the weeds and moss while dogsitting as I was bored.Will I never learn,so expect hands to be a bit sore today,and they are!Going to have 2 days rest,watching the cricket,before starting doing stuff again.Going to hospital with son on Tuesday for X-rays on his hands as he is having problems with his joints.I think ra can be hereditary,so want to catch it early,if so.Wouldn’t wish it on anyone.xx

[Chocnbags]

I have been taking it for two years and sometimes forgot to take it I have not noticed that I get a flare or pain .but I am still on methotrexate. But it is a great medication I feel great most of the time .

[Doodlereggie in reply to Chocnbags]

It is great isn’t it.don’t take methotrexate now as made me feel rotten with nausea,so very lucky that filgotinib works on its ownTake 2 paracetamol in the morning to get me going,and that works for me,unless I overdo things,and that’s another story.Luckily ,been retired for 12 years so time is my own,and can have rest days if needed!

[Annieb24]

I am on a different JAK. It does leave the system quickly but I think 2-3 days. I doubt it is related. I take leflunomide with it though.

[Doodlereggie]

think you are right,just think I overdid things,when I think back.Been digging my neighbours garden,which was full of weeds,but don’t think he has even noticed!My replacement knee was sore from pushing the fork in,so probably hands suffered too.Learned my lesson,to space things out and pace myself.

[Pastels]

I stopped Filgotinib for three weeks when I had covid and it took a good while for my RA to kick in but when it did I felt it!! It took several months to calm down and I was just about to start taking steroids to control the flare and either it ran out of steam or the Filgotinib started getting control again. Feeling great and back swimming, what a fantastic drug this has been for me.

Hopefully it was the gardening that made you sore I must say I haven’t looked at a gardening fork in years😂. Well done you!

[Blodynhaul]

Hi Doodle,

Sorry bit slow seeing your post. I've been on Filgotinib (FIL) for 20 months now. It has also been a miracle for me in terms of dealing with the worst RA inflammation I had thru 2021 after previous drug stopped working. But I do have chronic side effects that continue to dominate my life not in a good way. Because of the nasty effects of it on me, the rheumy thought I could try dropping from the 200mg/day to 100mg/day to see if it helped. So after 12 months on 200mg/day FIL I dropped to 100mg/day, but after 2 months wet back on the higher dose because lots of flares were starting up again. I certainly didn't notice a difference straightaway on the reduced dose - it took a few weeks & I carried on hoping it would settle, but it didn't. When I went back on the higher dose it took another 6 weeks to get back to where I'd been before. I stopped taking FIL when I had a dental infection & also covid, each time for a week and didn't notice the RA flaring. So I think missing a day wouldn't have that big effect you experienced.

Go well and hope things improve in every way for you!

[pammi2]

i have a choice now of taking this drug, what about side effects, he told me cancer and blood clots?

[Doodlereggie in reply to pammi2]

Hi

I can only go by my experience of filgotinib,but for me it has been a life changer!I am 80 next month and have had methotrexate,hydroxy,preds for last 24 years,biologics and filgotinib for last year.It is amazing!!I am down to 2 mg preds,no other painkillers needed,and have my life back.I have had shingles which can be a side effect,but antivirals made it short lived.I know there are risks,especially for me,because I am on the higher dose,my age,and I have latent t.b.i did not know about,but when I weigh it all up it is worth the risk for me.I have had no side effects at all,I take the one tablet at night with a full glass of water,and it is a miracle drug.Regular blood tests keep an eye on things and my crp has gone from 43 to 7!

Please do give it a try,as others on here have done very well on it.

The only pain I have now is in my wrists,if I do too much gardening etc,as damage was done many years ago when such advanced targeted drugs were just a dream!let us know how you get on and think positive thoughts!!xx

[pammi2 in reply to Doodlereggie]

HI thanks no offence I am no where near 80 and they way he rhuemy told me about side effects so blantently CAncer and blood clots, it was just words to him. my CRP is 12 at the moment when everything was good i used to be 5 last year. I am just concerned about side effects and long term effect