filgotinib

[Pilates-queen]

I have been taking filgotinib for over 6 months and struggling with bilateral shoulder pain and bursitis.

I have had 2 shoulder injections which have helped but they only last a matter of weeks.

I also take sulphasalzine which I have recently increased to 3 tablets Morning and 3 at bedtime.

Unfortunately this has not helped. My nurse is now considering a small amount of methotrexate.

Does anyone else take an extra DMARd with filgotinib?

[Amnesiac3637]

I don’t but mainly because I’ve been through the whole lot and they don’t suit me so am on mono-therapy. Filgotinib working - been on it about five months now so it’s had a chance to show what it’s made of!

Hope your rheumatologist can sort you out. I think a lot of people take dmards alongside jaks.

[Teddyboy17 in reply to Amnesiac3637]

How long was you told the Filgotinib would take to work ?

Thanks

[Amnesiac3637 in reply to Teddyboy17]

The blurb will tell you it takes up to three months to reach full effect and incrementally up to then. No-one told me how long it would take to work as everyone is different but for me it started to be effective within a few days as I could see my swollen hands reducing and I felt better almost straight away.

It’s still working though it’s not as good as Baricitinib which I was on for three years. That stopped being effective after I had Covid. Filgotinib has certainly reduced the inflammation in my joints witnessed by a recent ultrasound but it hasn’t done a huge amount for pain. I also am on prednisolone 8mgs daily and have been for 34 years so not just a JAK keeping me relatively stable.

Hope Filgotinib works for you.

[Chocnbags]

Yes I take 15 methotrexate and Hydroxychloroquine with a 200mg filgotinib tablet . I feel so much better only small flares now and then

[Lilahloo]

I am on Filgotnib which did work for a while but now to have to take prednisone as well to stop flare ups until, I see my consultant. I am only on 2.5mm a day so a small amount but works wonders.

[Mmrr]

I've been on Filgotinib for around a year now, I'm better with rather than without it. However it has not been the wonder drug for me ( no drug has).

I also take Leflunomide and 12mgs oral prednisolone every day. My quality of life is poor.

[JulieMBrown]

Hi sorry I’ve just seen this. I started taking Filgotinib 200mg daily 12 weeks ago and have continued with 25mg Methotrexate injected weekly.

[cozzycoz]

hi, I have also bilateral should pain, been on Filgotinib almost a year, but fear it’s not working for m previous on Rituxamab, which was awesome for a while, also was on methotrexate but had to come off it as made me feel terrible, now taking Leflunmide alongside but it’s not working for me either, hoping to try something else but running out of options! Currently waiting for a steroid injection, hope you manage to get sorted soon .

[Flipper12345yellow in reply to cozzycoz]

Why did you stop rituxan?

[cozzycoz in reply to Flipper12345yellow]

Hi, I was taken off Rituxamab as they pushed for me to try Filgotinib ! They were saying it was t working as well as it had, but I kept trying to tell them that they were leaving me too long between infusions! Fell on deaf ears, but happy to say they have allowed me to go back to Ritux & I have now had my first infusion with the second next week, so hopefully will sort me out as I have been suffering while waiting for it! I’m aware it can take 6-8 weeks to properly kick in but I’m hopeful it will work as well as it fed before 🙏🏻