Filgotinib: hi everyone Just need a bit of reassurance... - NRAS

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Filgotinib

Doodlereggie profile image
10 Replies

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.

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Doodlereggie
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10 Replies
helixhelix profile image
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 profile image
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 profile image
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 profile image
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 profile image
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 profile image
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 profile image
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 profile image
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 profile image
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 profile image
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!

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