Filgotinib

[Amnesiac3637]

If you’ve got it what glorious weather and about time! 😎

Am just wanting to know, from anyone who is on Filgotinib (and there are quite a few of us now) how long, if at all you had any lightheadedness and slight off-balance with it when you first started on it?

This is my second Jak - had Baricitinib previously with no side effects - and have only been on it a couple of weeks and I know side effects can take that long to either arise or start to fade but it’s a disconcerting feeling and it’s always worth asking others for their experiences (despite us all reacting in different ways) as there’s usually a common thread with these heavy duty drugs. Thanks as ever in advance.

[Slinkyminx]

I too changed from bariticinib to Filgotinib It worked very well. I had chest infection but I normally get these in any of the drugs I’ve taken Good luck

[Amnesiac3637 in reply to Slinkyminx]

Thank you - glad it’s working for you.

[28maggie11]

been on it for about 9 months best so far. Funnily get a strange sensation in my head now and again. Didn't associate with the drug but could be. Good luck

[Amnesiac3637 in reply to 28maggie11]

Thanks - who knows with these drugs what they do to you but as long as they work……..😀

[Doodlereggie]

hi

I have been on filgotinib for about 8 weeks now and it has made such a difference to my hands and wrists,where most of the pain is.I was also spaced out for the first week which was quite off putting,so asked advice on here from others,and following their advice started taking it before bed with a whole glass of water.So,although I do have to get up in the night,as you do when you are old,I was not lightheaded any more,and had now forgotten it ever happened!No other side effects at all,which is a miracle really.So,if you don’t already,take at night,and like me it will pass.The only side effect is I tend to do too much all at once,as have less pain and more energy,must learn to pace myself more!xx

[Amnesiac3637 in reply to Doodlereggie]

Thanks for replying. Yes, like you I am old and have to get up in the night ( so irritating!) and I do take my Filgotinib at night so as to reduce the side effects but it was the strange lightheadedness I was wondering about. It seems you may have had something similar but as we always say on here, we’re all different. I see most people have had hardly had any side effects at all which is great news and I shall see what happens with this, my umpteenth drug of 33+ years!

[Flossie-M]

Hello,

I started filgotinib 3 weeks ago. So far I haven't had any side effects at all. I take it after my breakfast. I was on benepali injections for 7 years before this, which within this time has ruined my hair 🥴 having said that, I'm also going though menopause which could also have contributed to that. I also had odd skin rashes (not on the injection site) and itchy spots and rashes on my back which doctors and my rheumatologist couldn't give any relief from. This has all cleared up once I started on filgotinib! Hoping it will also sort my hair out but time will tell with that one 🙏. Anyway, kind of went off track of the subject, but yes, really happy so far with filgotinib and no side effects so far 🤞

[Amnesiac3637 in reply to Flossie-M]

Thank you and so glad you’ve found one that works!

[Blodynhaul]

Hi A, good to hear yet another on Filgotinib now (FIL) ! I've been on it nearly a year and a half & it was new here then. I was in a very bad way with the RA completely out of control when I went on it and I would even call it a 'Miracle Drug', as it gradually improved things so much, from living in all-over agony & debilitation, unable to do the slightest thing.

However, the 1st year on the high dose (200mg/day) - I had significant side effects - you mention head - I had hideous headaches, was giddy to different degrees every day, BP was very high consistently, was breathless all the time & had a chronic cough - also put on a load of weight. Sometimes I genuinely thought I was having a stroke. Such pressure in the head & pain & chest etc. I'm not sure whether the drug was/is responsible for it all as some may have been as I'd got so ill with the RA for a whole year out of control, but certainly felt most of it was FIL. Having to run to the loo (bowel movements) was (& still is) the FIL. Often within 5 mins of taking it I have to run!

After a year (beginning of this year), the rheumy suggested cutting down to the normal dose (100mg/day) to see if the side effects reduced and I did feel that the terrible heads improved somewhat. Also, as had been investigating the symptoms via the GP, I'd gone onto to a BP pill, so that was under control better. I was only 2 months though on the normal dose, as unfortunately the RA started flaring up again. I didn't wish to return to anything like the state I'd been before FIL, so asked to go back on the high dose of FIL, which I've been on 2 and a half months again now. It took 2 months on the high dose again for the flares to reduce (even though I'd not come off FIL, just lower dose) so I'm sticking on the 200mg/d and hope it keeps working.

I'm not perfect by any means and hands in particular are a problem all the time & body a wreck - but in terms of side effects - things have improved to a degree, even though I'm on the high dose again - I still have huge weight gain which somehow I really have to deal with, but at least I can walk a bit again & potter round. The terrible heads, chronic breathlessness & dry cough have all reduced, which is very welcome (not sure why that's the case as back on the high dose again - unless it's taken a year to get used to it! or if other causes in the body - but glad of it), but I still have funny heads daily & light-headedness, fuzzy, a bit swoony & brain fog, but can cope with it. Still feel I'm in a completely different body to before 2021, but that's how it is. So grateful for FIL anyway, as really don't know where I'd be now if it hadn't kicked in!

Wishing you all the best. Hopefully your head effects will wear off, but see about it if things worsen. It does say some dizziness etc is a common side-effect of FIL. Go Well!

Blodyn

[Amnesiac3637 in reply to Blodynhaul]

Blimey, sounds like you’ve been through the wringer with all your side effects. So sorry you’ve had to put up with all of that -I’d have given up ages ago! I have nothing like any of what you’ve described (for which I’m very grateful) and am hoping this time round for the the umpteenth drug I’ve embarked on it will be the one giving me the most benefit for the least trouble.

I am only on 100mgs as when I first started on 200mgs my lymphocytes were abnormally low so have reduced to half dose to see whether that makes a difference. The lightheadness is only infrequent but very annoying as my head doesn’t feel right and I never know when I’m going to feel slightly ‘off’. I have had an MRI of my brain recently which was perfectly normal so that’s reassuring. I’m hoping this side effect - as I’m sure it must be - will diminish within a week or so. Thank you so much for your good wishes and I really hope things improve for you before too long.

[Blodynhaul in reply to Amnesiac3637]

Thanks A, really glad you're coping mostly well on FIL - as you say, the funny head may well ease off in time. The symptoms I've had since starting FIL - I'm really not sure if other factors like covid jabs were interfering with things too, it all being immune system related. We'll never know! But - the good thing is some of the bad symptoms have reduced recently, so perhaps it has taken all this time to settle...We'll see! Great you had a MRI scan of your brain. I wish I'd had that last year as honestly thought there was a serious problem in the head! ANyway - GO WELL! and hope you can report good news next time !

[Pastels]

Hi, I’ve being on Filgotinib 200mg for about 18 months now. I did have some light headed symptoms for a few days at the start and then just occasionally, now no light headedness at all. It’s been a fabulous drug for me up until now, I think I’m having my first breakthrough flare. Having said that I’ve enjoyed the best 18 months in years. The very best of luck with it👍

[Amnesiac3637]

Thanks so much for replying and so glad Fil has been a success story for you and hope it continues!

[cozzycoz]

Hi Amnesiac3637

I have not long strayed Filgotinib, this is my second month, I too had light heads, & dizziness, I feel like my balance & spatial awareness is a bit off at times still! Not sure if this is going to be lessening as I progress or just going to get use to it?

Do you also take Methotrexate ? I would like to come off it now as I find the side effects from this worse! I have lowered my dose but still feel 🤢 & tired 🥱

I have also had a pain in the left middle side of my back , which I’m trying to get looked into , as states as a side effect too( back pain) waiting for a call from GP !

I do feel that it as working as able to get around a lot easier again now, this is my 3rd biological, had been on ritux which was also good but had around 8rounds of it so they decided I needed a change!!

[Amnesiac3637]

Hi cozzycoz

Thanks for your reply. Interesting that you too have had balance problems, lightheadedness and dizziness. I still have this in varying degrees and hope it’ll settle very soon. I can cope with pain (never without it) but anything to do with the functioning of my head really makes me miserable.

I was on Methotrexate years ago but loathed the side effects as it made me feel really ill ( nauseated, foggy, just horrible) for four days out of seven - I really couldn’t function - so I refused it after taking it for four years and have never taken it with any of the drugs I’ve had since of which there have been many! It’s a weigh-up between what the disease does to you and what the drugs do to you and Methotrexate was the one I really couldn’t tolerate. Filgotinib is giving me more energy already and my hand swelling is lessening so I’ve got hopes for this if it keeps working and the head symptoms go.

Hope your back pain gets sorted out - just another thing to put up with - and whatever side effects you’re still having from Filgotinib subside and it works well for you in the coming months. All the very best.

[Helen-NRAS Moderator]

Good morning. If you would like support, information or just someone to talk to, our NRAS helpline is open every weekday from 9.30am to 4.30pm nras.org.uk/helpline/ 0800 298 7650. Or have a look at our website nras.org.uk. This publication may be of help to you nras.org.uk/product/medicin.... Kind regards.

[Amnesiac3637 in reply to Helen-NRAS]

Many thanks, will do.

[1245toie]

I have had a reaction to FITGOTINIB & have stopped taking them. Severe dizziness, chest palpitations, mouth ulcers plus I felt as if I was going to pass out! Ended up in A&E whilst on a trip to Spain. As soon as the Doctor saw That I took the drug he said ‘adverse reaction’! I can honestly say Never again! It is not the first Rheumatoid drug I have been prescribed as others have caused, asthma, shingle rashes, conjunctivitis & mouth ulcers.

It is taking awhile to recover from this episode which made driving impossible!

[Amnesiac3637 in reply to 1245toie]

Really sorry to hear that and hope you recover soon. I have been on Filgotinib since April and although, thank goodness, I’ve had no such horrible problems with it, it’s not being very effective and I am continually in a low-level flare. It’s such a lottery with all these drugs that we’re very fortunate if we manage to hit on one that keeps working for a reasonable time and doesn’t try to kill us! All best to you.