Jak Inhibitor Filgotinib

[Teddyboy17]

Hi

Been on methotrexate and sulphasalazine since last year so newly diagnosed but not under control and was put forward for Humira , however because of a previous issue some years ago nothing related to RA I’m not going to be suitable for biologics at the moment so Gojng to start me on Filgotinib. I’m scared reading all the side effects although I know all drugs come with side effects it’s all rather overwhelming long term . I feel I’m nervous as they are newer drugs . Is anybody else on them and what’s their experience albeit everybody different I know. I’m concerned about the cholesterol and is it possible to keep that lower with diet or does this make no difference and it’s purely the drug that does it.

Thanks for reading . It’s been a tough past year .

[KittyJ]

if you put that into the search box and filter for NRAS then all the past posts about it will come up 😊

[Madmusiclover]

the only two drugs that have worked on me are JAKS. Yes side effects are scary but well worth it even if it happens. I’ve had facial shingles! As for triglycerides my rheumy knows about the slightly elevated reading and is unconcerned; GP keeps trying to put me on statins but as my hdl/ldl ratio is good I’m resisting. Quality of life on these drugs is worth any risks for me. My new JAK has started working within 3 days after nearly a year of agony and disability. I know which I’d rather. You can always stop them. Nothing is forever. Good luck.

[JulieMBrown]

Hi I have been taking Filgotinib for12 weeks. I’ve had headaches and nausea but in general I’ve been okay. I also take 25mg of Methotrexate weekly. The Filgotinib has worked really well for me, and in a very short space of time. It’s reduced long-standing inflammation and pain in my feet - unaffected by Methotrexate- and transformed my ability to walk and get about. It has been amazing. I was on a Statin anyway and have stayed on that so hopefully that will mitigate any cholesterol issues. In the end all the medications on offer have side effects, I remember being really nervous about taking Methotrexate but I’ve been using it for over a decade now. For me the choice is stark, losing my ability to move around freely or trying the medication offered, I always give it a try but it’s your choice of course.

[Madmusiclover in reply to JulieMBrown]

I’m with you. We are between a rock and a hard place eh? Glad you are doing well.

[Chocnbags]

I have been taking Filgoitnib for almost 2 years , best thing I have taken headache for first couple of weeks then nothing ,it really has changed my life 🙃

[Mmrr]

I've been on JAKs for several years, Filgotinib for about 18 months or so. My cholesterol is high (8.3) which I take a statin for, otherwise I've had no side effects at all.Like you I didn't tolerate biologics, JAKs have far better for me.

[Teddyboy17 in reply to Mmrr]

Was your cholesterol high before you started it or purely side effect ?

[Mmrr in reply to Teddyboy17]

My cholesterol was a little on the high side, I think around 6 before I started the JAKs. But they have been the best meds by far for me.

[Beechwood1]

Hi Teddyboy17, your diagnosis a year ago is still relatively new and you're understandably overwhelmed by all of the information.

The lovely ladies on the NRAS helpline 0800 2987650 are available with advice, just for a chat or as a great sounding board, Monday - Friday 9.30am-4.30pm, please give them a call - they'd love to hear from you. Good luck

[Doodlereggie]

Hi I am on filgotinib after 23 years of nothing really working for me,biologics last year did nothing for me.Been on JAK for a year now and it is miraculous.I too was very nervous when starting,but the lovely people on here gave me brilliant encouragement and,my god,were they right.Within a few days of one tablet a day I felt the pain slipping away,and now I am pain free.My hands have osteo so cannot help them,too far gone,but I can walk again with proper shoes,and do my garden etc.

I,personally have had no side effects that I know of,and after 6 months my crp had gone from78 to 7 !I started at 200mg daily,but rheumy reduced to 100 mg after 6 months as higher dose not advised for my age,80 this year.However,pain returned so back to 200mg,and will take my chances,as quality of life against possible risk worth it!

No injections,only one tablet a day,and,for me,no side effects,so very much hope it does exactly the same for you.Go for it,and let us know how you get on.

[Madmusiclover in reply to Doodlereggie]

Wonderful. We are lucky to live in the age of JAKs aren’t we?

[Doodlereggie in reply to Madmusiclover]

We most certainly are,but we’re worth it!!

[Anniebl24]

I love JAKs too! Raised cholesterol a bit so I take three statin tablets a week.