Grateful if anyone has any experience of Filgotinib/ Jyseleca. I've just seen one or two other references to it & other JAK-inhibitors on here. I'm supposed to be starting Filgotinib probably in a month's time (having failed on 2 DMARDS & biologic Adalimumab). Desperate for something to work against the RA, but have reservations due to some alarming unquantified risks of it & other JAKs (eg. that The Lancet article Sept 2021 ) & therefore only used when nothing else has worked. Would be lovely to hear some success stories for this drug, or other JAKs, but any feedback good or bad would be appreciated. It's not a comforting thought embarking on something that implies serious risks for cardio-vascular stuff, stroke, clots, cancer & so on, as I'm sure many people here know all about, but can't continue like this either. That 'weighing up' thing again. Thanks very much for any experience /knowledge/advice/ comments on this.
Is anyone on the JAK-inhibitor Filgotinib/ Jyseleca? - NRAS
Is anyone on the JAK-inhibitor Filgotinib/ Jyseleca?
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. Kind regards.
Thanks very much for reminding me of that service, Helen. I'll give it a go. All the best.
I've been on baricitinib and now take toficitinib, both of which have given me the best relief from the ravages of RA of any other meds I've been on.
Baricitinib was giving me repeated viral infections, which I haven't experienced with toficitinib since changing.
My cholesterol levels have increased to 7 since taking toficitinib, but I've decided not to take statins as I have soft tissue and muscle aches and pains anyway as part of RA and didn't want to possibly add to these issues.
It can be a worry taking these or any other meds, but I generally do feel better on toficitinib so take the risk, as I was really struggling prior to taking it.
Thanks very much Mmrr for your very helpful feedback. Pleased to hear the JAKs are helping more than other things. If I needed statins I'd probably also not take them like you, as also have widespread connective tissue aches & pains and chronic agony in certain areas. As you imply, we'll take almost any risk to feel better 😏. Do you manage to maintain a low-cholesterol diet & still have the level rising? How long have you been on toficitinib?
I eat healthy, freshly cook all my food, including fresh home made soup every day (in my soup maker) and home made bread in my bread maker, but I don't necessarily eat a low cholesterol diet. I eat mainly fish and vegetarian food with some chicken and red meat on occasions. It's my partners birthday today, so we are having steak tonight.I've been on toficinitib full dose for a year, and previously was on a half dose for several months as I have experienced horrible side effects with just about every med I've tried.
I am in a but of a flare just now, possibly brought on with the 3rd primary dose of the Covid vaccination, I'm just hoping it settles soon.
Statins are best at preventing a second cardiovascular incident, rather than a first , so I just live in hope and try not to think too much about it.
Best wishes to you whatever you decide.
Thanks again very much Mmrr. Your diet sounds perfect, so hope you don't continue to have raised cholesterol due to the drug. Wishing you all the very best & hope your current flare subsides and all will be well x
Hi BlodynhaulI'm about to start FILGOTINIB as part of a trial which will monitor side effects and benefits. I've had the counselling and checked out the research.
I share the concerns, lots of RA drug side effects look awful on paper, and I guess it's the risk/benefit picture varies from person to person depending on our particular situations.
I'm aware the cholesterol changes are part of the monitoring, so interested and a bit worried to see what may happen there.
But I've been in more pain for a while, my wrist is eroding away, and I don't want to lose further functioning. Also, if I don't find a drug that treats the RA, and it remains active, I know that brings a risk to my cardiovascular health and other systems too. So the risk of the drug may be less than leaving the disease sub optimally treated.
I'm hoping that adding it to current methotrexate will let me reduce the methotrexate a bit, as it brings side effects too.
No idea what effect the new meds will have re covid risk, but I know that as a tablet with a short half life, if I were to stop it, it'll leave my system more quickly than the methotrexate would.
So many things to wonder about. Fingers crossed for us all!.
I'll post in a while and let you know if anything interesting happens. 😬
Thanks so much Macb12 for your response. It's good to feel someone else in a similar position!
Interesting to hear you're on a trial with Filgotinib. Perhaps better that way as probably monitored a lot more closely. Yes - look forward to hearing your experience being on it.
I've been on it 3 weeks now. Although still early days, I felt some promising improvement in the first 10 days, but since then not, so still feel rubbish, though I find it hard to recognise the difference sometimes between the RA pain & 'chronic pain' that the rheumy said is separate & not inflammatory, but is horrid.... I probably do have less inflammation in the body as legs have improved (the bloods will tell), but still a load of pain, stiffness & weakness, but hoping these things will improve in time. I suppose a sudden resurrection was too much to hope for!
Good Luck! all positive thoughts for 2022 😊💖👍
p.s. I'd have liked some informed and sympathetic input re. starting Filgotinib, but the rheumy just announced that's what I was going onto in a very rushed appointment In Oct. I emailed back a load of questions & was fortunate to get offered another appointment in Dec. (expected a phone call) so had more of a chance to discuss things then, though the rheumy's attitude remained unapproachable & impatient so was a battle to get answers (which one doesn't need when feeling awful!).
It's awful to have those rushed appointments and worse again if they're rushed and on the phone. It's disempowering, and leaves you more anxious about side effects than you might be if given time to discuss and digest the info. I've had that experience too. In fact that seems to be the norm, sadly. 😒
Id made contact with my rheum helpline in the summer because I was getting progressively worse, and they talked then about starting me on Adalimumab if the increase in methotrexate didn't work, so 6 months later when I had my next appointment with the Doc and feeling no better despite increased methotrexate, that was what I expected he'd suggest.
Phone consult so I feared the worst 🙉 expected a rushed decision along the lines of starting Adalimumab. But having had a rushed phone appointment before I came prepared this time 💪 determined to get as much info across in my first sentence, and to keep taking till I'd told him the full list of issues and what I needed to know re ongoing treatment. 😂 ...he suggested I come into clinic in the pm to discuss further, and he told me about potentially using filgotinib instead of the planned Adalimumab, so I'd time to look it up before I met with him- think that was the most helpful thing he's ever done!
He was clearly involved in the research re filgotinib (studies in numerous European sites just now), so in some ways it concerned me he might just be looking for enough volunteers, regardless of suitability- but he did take the time to tell me the pros and cons of that versus Adalimumab and he did let me choose.
From what I've read, and the ongoing discussion, in the past I wouldnt have got this chance without having tried and failed Adalimumab or similar first. It seems there is a shift in prescribing now, allowing me to be offered this earlier than I would have been in the past, and that seems based on the general success of JAK inhibitors and the hope that they can treat to target (remission) more quickly than they might with TNF inhibitors and therefore prevent some of the bone erosions and other issues that might be experienced otherwise. I figure the quicker I can slow or stop the damage to my wrist, the more functionality I'll maintain, the longer I can work etc.
Another benefit is that if it's going to be beneficial, it takes effect more quickly than other drugs - couple of weeks versus around three months. That's important when youre at the end of your tether with pain that keeps you from sleeping night after night. And also, it's a tablet, so we avoid yet another regular injection. 🙌
I was shown the stats re potential side effects, but to be honest, the side effects of Adalimumab make grim reading too...same with the other dmards, TNF /JAK inhibitors. Pros and cons to all of these meds, as with any drug. The effects on lipids / cholesterol seems to be what they're most interested in finding out more about. They're aware there's a risk of opportunistic infection potentially higher risk of UTI and shingles specifically. Cancer and cardiovascular risk didn't seem particularly higher than it might be with other biologics.
I guess your genetics and other risk factors will play a part I this too, and some of those we can't control, but some we can.
I may be wrong but to me, the main downside / unknown re figotinib- this being a relatively new JAK inhibitor- was that they don't have the longer term safety stats. Hence the trial to find out more. But these advances need to start somewhere for the benefit of us all.
My doc seemed to think the trial would likely show filgotinib to have a safety profile comparable with other drugs in its class which have been safety tested for longer periods. He also thought the evidence they already have shows that JAK inhibitors are working well and well tolerated for many, and likely to be more widely used in future and earlier in the treatment schedule, because it will prevent damage more quickly and effectively for many. I'm aware that's his opinion and he has no crystal ball...
And for all he can often seem hurried, dismissive, and unwilling to discuss issues, I do find that when he takes the time he seems to understand, and I'm sure he knows more about RA than I do, so I'm inclined to trust him!
If you look up the NICE guidelines and SMC guidance it seems treatment with JAK inhibitors is becoming more widespread and more quickly used. It's considered safe enough from what they already know. The stats re filgotinib are there too if you dig around.
So I was lucky in feeling I'd enough info to balance it up...I chose filgotinib over Adalimumab for now. I reserve the right to change my mind if it all goes wrong 😬
The trial is a little reassuring as I'll be followed up, and if I have side effects, that will be recorded and go some way toward what we know of this drug.
But trial or no, we will all be monitored and followed up and we all have a right to report side effects and ask for a change in treatment if we feel we need it.
I'm glad you can persevere and email and get another appointment etc when you feel you need to be better informed or listened to, or have more questions. (Though it would be better if you had this to begin with 🙄)
It's heartening to hear you maybe did feel some quick improvements, though I can empathise re the difficulty in knowing what's working or not, and what's down to meds or activity level, or flares, or stress, or inflammation or the weather or those shoes you had on, or god knows what else! 🤷♀️
I guess it's early days and still time for more improvement for you? 🤞I do hope so, even if it's not the sudden resurrection kind!
Would be good to hear how you get on in the coming weeks, and whether the blood results match up with how you actually feel? 🤔
Wishing you a happy and hopefully pain free new year to come Blodynhaul! 🎉❤️🩹⚕️
Thank you ever so much Mac for your full, interesting and informative comments. It's really helpful. I get all you say about Filgotinib, the Pros & Cons, the trial & why your rheumy has put you on it and the shift towards using it earlier in treatments, so all that was 'comforting' in a way 😏😊.
Interesting you mentioned you would have been going onto Adalimumab, but following your detailed talk with your rheumy, he bypassed it straight onto Filgotinib. I managed to get an appointment with my rheumy last March (as Leflunamide seemed to have stopped working in Jan/Feb 2021) & as I'd failed on methotrexate (after 13 years), then Leflunamide (6 years) she put me onto a biologic - Adalimumab, I started it while in a bad way early July with big hopes and after 3 months was worse than ever & then blood test showed I was making antibodies against it, so that was why it wasn't working. Then as I said I started Filgotinib 3 weeks ago. I've gone downhill so much this year & living with so much pain ¬ able to do so much that I can barely believe a year has passed with no treatment working for the seriously active RA and with occasional steroids & painkillers barely helping.
So - have High Hopes for Filgotinib! Not wishing to be negative about it as really hope things will improve, but with 3 weeks gone & the JAKs seeming to be drugs that work within weeks as you say, there's a fear this is the 'best' I'll get, which is scary! But, yes there are plenty of other options, but it does feel like if this really promising one doesn't work, then the other ones won't either. But, rationally, reading around, it doesn't mean that at all, as everyone seems so different in their responses & someone can suddenly find one that works after failing with loads, so...!
Thanks so much again Mac. It will be great to keep in touch with any new developments/progress/side effects etc., so would really appreciate your feedback again in due course (but no pressure). Best of Luck! let's aspire to feeling we have Brand New Bodies in 2022!
👍😊😁💖💪🐑👍
I didn't realise till reading your posts that our immune systems could actually have the cheek to produce antibodies against our meds!! What chance do we have 😱
It can take so long to see a rhem doc, have meds changed, wait for the outcome then feedback, more tests, etc and yes, it's easy for a year to go by without feeling you've made good progress.
I guess worst scenario is to be taking something that doesn't treat the illness, let's it continue to progress, and also causes side effects. That's a real fear.
I do hope this is not the best it gets for you. As you say, different meds suit different people. I'm sure there's a combo to better treat us all.
But always good to know we're not alone with this. Good luck to you too! 🤞💪🙏
I hadn't realised it could happen before either - rather dispiriting! I'm not sure how often producing antibodies against the meds happens - perhaps that is the reason every time something doesn't work for someone, but I hadn't heard of anyone else on this forum having a test/being offered a test to check if that was happening to them - so was surprised when my rheumy asked for the blood test after 3 months on Adalimumab, but glad not to have stayed even longer on it hoping it would work. You're right how Time is such a factor having to wait for appt, wait for meds, try them out, report back, wait again etc - and feeling so ill all the time & damage being done to the body.
There are some alarming accounts on here where it's taken not just months - but Years - of someone trying till one works! That's scary indeed when you're really ill with it. But, as others often say on here, the vast majority of people who are doing well on treatments don't comment on here hardly, if at all. Also, as you say, none of us are the same, so it doesn't mean it will be the same for us as for someone on the same treatment etc.
It was odd that this year I had 2 infections and a bad reaction to the 3rd covid jab - but that whilst feeling dreadful in other ways each time - the severe joint pain of the RA 'turned off' ! It then came back just as fast after a few days when the other things subsided. Found that very interesting & when I told the nurse & rheumy about it they said the immune system can't fight both, so concentrates on the infection and 'forgets' about the RA! So, it seems obvious that a cure should involve some way of switching off the part of the immune system that gives us RA. Sounds simple, but I'm ignorant!
I'm all for doing my own research in order to 'work' with the rheumy, report things to the doc & scrutinise things, all to try & help myself and get better. That way we should be on the best plan of action and that's all we can do really isn't it.
Sorry, rabbited on again! Hopefully soon we'll be able to share positive results! Go well Mac X
Hi,
I’ve been taking Filgotinib 200mg once a day for about 4 months and am absolutely delighted with the results and I can’t say I have any side effects now.
I’m feeling so much better, my hand function is great I can do so much more cut vegetables, open the door without hurting! Seemingly I’m walking faster too….if i waken in the night and do a body scan I don’t hurt, it’s so good almost worth waking up for.
I’m having my bloods repeated as my cholesterol is a bit higher.
The best of luck if you decide to take it
Hi Pastels,
Thanks very much for commenting. Wonderful to hear you're doing so well on Filgotinib - that's so encouraging - thank you! I've been on it now (same dose as you) just over 3 weeks and did feel a dial turn a little for the better within the first 10 days, but that's not come to anything since. I was hopeful things were on an upwards track, but not so yet.
Just wondering how long it took you to notice any improvement? Although a lot of the body affected, my hands worry me the most in case they are permanently damaged. Have bad chronic pain, stiffness, locking, weakness & stops me doing so much - so thrilled to hear how much better your hands are! And the joy of waking in the night to no pain - wow! Gives one hope. Grateful if you can let me know about how long to feel improvement & what type of improvement etc.
Thanks so much & wishing you all the very best in 2022 for continued improvement!
Hi,
I think it’s been slow incremental changes, as my pain swelling and inflammation decreased I did slightly more with my hands and began to challenge my body more.
I sometimes feel my body trying to flare and I slow down and try to rest but not to much. Using my hands more causes slight pain/ache because my muscles aren’t used to been worked and that’s different to arthritis pain. My knees hurt but I can walk further….
I guess it’s not taking as many painkillers feeling naturally tired rather than arthritis exhaustion. It will I guess be different for everyone and it takes time to build stamina again……fingers crossed as you begin to build that stamina😉
Thanks very much Pastels for that insight 😊👍 Best of luck X
And the very best of luck to you! Let me know how you go, it’s good to hear how others are doing with Filgotinib. 👍
Definitely! thanks again - and truly hope you have more & more improvement 😁
I have just started this medication, and have asked to speak to my consultant because there is lactose in the medication and I am lactose intolerant and I am suffering at the moment. I am still taking the meds until I hear from my consultant, but RA pain has been so bad since Christmas I feel really low. I think I am running out of options 😒
Thanks for answering, Bagpuss. O dear, that's an extra complication for you with the lactose intolerance. Hope that can be sorted somehow. ..
Totally empathise with you feeling dire with things not working and feeling so awful with fewer options. Although there seem to be a lot of biologics and so on available, it's still easy to lose heart when things don't work * time drags on while still feeling awful, even when it sounds like most people do find the magic one in the end. We have to hang on in there & be as proactive as possible to get action/feedback from the rheumy etc, not always easy with the lag for answers and so on, as you know.
Will be really interesting to hear how you get on with Filgotinib too. There aren't many on it yet, but it seems it does take time to gradually help... Take care & keep in touch, sincerely hope things improve X
just waiting for a call from Rheumatology. Question to ask perhaps if I stay on the new meds, could I have something to help with my intolerance. only time will tell.
Yes, they need to answer that. Good Luck!
Good luck with your phone call, difficult one with the intolerance. ….🤞
Blodynhaul...the immune system is fascinating but I wish it was better understood, for everyone's sake. So good to hear some positives about this medicine. And Pastels...cutting veg and opening doors 😍...some would say that's just showing off! 😂 People without RA wouldn't believe the simple things that feel so good when you've not been able to do them for so long! Hope everyone gets some benefit, or finds what helps them, and Bagpuss, I wonder if the intolerance would lessen over time of taking this, or as you say, if anything else can be given alongside to help? Hope they find a solution to that for you.
🤞 For us all!
That made me chuckle!
I did a bit to much and put my back out so definite swings and roundabouts…
Off for my cholesterol check next week let’s see where that goes, having eaten my body weight in cheese over Christmas 😂
Ha ha! I shouldn't laugh, sorry. Yes, the danger of feeling a little better...I tried a little shopping this week too - and only ended in tears and everything horribly worse for a couple of days...but try and gauge gradually doing things again as much as possible, gently!
Hope your back is recovering!
By the way - is your cholesterol test a Fasting one, or not? My rheumy's letter assumed I had a fasting one (my first, pre-Filgotinib one) but it wasn't.
All the best X
p.s. I actually salivated when you mentioned that much cheese!
Hi, just emailed to ask if it’s a fasting test, thanks for the heads up!
Thanks Pastels 
!
Totally agree. Until you're in the position of having crazy chronic pain & debilitation not able to do the simplest of actions, it's easy to take so much for granted and just not understand the suffering, however kind and well-meaning people can be.
Unbelievably, I actually managed to scrap and cut a bit of veg on Friday too! find my own way to 'hold' the knife and vegetable, as we do, trying to improvise as much as possible with every movement , a struggle and fingers and hands hurt so much! but dare I say I'm able to do a little more. Everything's cricked and crocked & painful to do things , but inside feel there's not so much inflammation perhaps and am moving more easily & perhaps most of the pain I have now is 'other' chronic pain, who knows.... - but hoping this is the Filgotinib slowly kicking in. Started 2nd pot today, been on it one month
Go Well! X
Hi, how exciting here’s to your second pot! X
Put your back out! 🤦♀️
Fantastic that you're both feeling an improvement. But hey, be careful out there...veg peeling is one thing, but next you'll be telling me you're mashing tatties 😱 or opening jars 😮 Take care!
🤣🤣🤣💪👍!
That kind of extreme eventing is best left for a while😂
😆🤩😩💪🤣😏👍🙄👎💪!!
Wee update on filgotinib. Im 8 weeks in and it goes well!
I had an almost instant head cold when I started it, then some daily dizzyness for a couple of weeks after that.
But also started noticing the usually constant pain in my toes and fingers was lessmoften and not as sore as usual. The roving pain in ankles, knees, elbows, shoulders seemed to reduce too, though I still have days of some of these joints being sore.
But I'd say overall, all my joints feel a good bit better, and some of them I've not felt sore in weeks! The worst joints have always been my wrists and one of my ankles. They still hurt daily, but not to the same extent as before, definite improvement, especially feet and ankles.
And get this....some days....I can open jars!!🙏☺️👍😎😮
I can even some days do that polishing motion that's required to wipe down worktops and clean things. Never been so pleased to do housework! 🤣
Tend to be sore for a day or two again once I've done those tasks - maybe just need to take it slower, and build up muscles again.
But the BEST thing...is that I've got SO much more energy most days now. It's as though the fog of fatigue is lifting, and it makes life so much easier than it's been for years!
I've built up to walking for 2-3 miles with the dog most days, and still have energy after that. Ive also gone back to hillwalking, which I used to love. Have started with smaller /easier hills, taking an age to get up them, and can be sore the next day, but that's good old fashioned muscle pain you'd expect if you've not used those muscles in so long.
For a long time I'd thought my hill walking days were over. So grateful to have another shot at this.
I'm delighted! My bloods are due, so I'm hoping my cholesterol level etc is all doing ok and I can continue on this, and continue to build up my exercise again.
I really hope you're all noticing these improvements too with filgotinib, and that side effects are minimal.
Would love to know how you're getting on now a few months in?
🤞
Hi Macb12,
Grreat to hear you have decent progress on Filgotinib! Long may it continue!
I've been meaning to report back too as I've now been on it almost 4 months (flown by).
Progress has been slow, BUT there has been significant progress I'm very glad to say. Gradually Filgotinib has reduced most of my RA inflammation, so - from being in total agony in nearly every joint in the body for so many months & unable to look after myself or do the simplest actions - I can now walk & move around (slowly and sometimes with limp) & do a few basic tasks & drive a bit. I don't have the overall level of agonising pain from the very active RA I had all last year, but feel kind of stuck halfway, in the sense I still have significant chronic pain (especially fingers/ hands/ arms), a lot of stiffness in many joints & enduring weakness. My knees & ankles & feet are very dodgy so have to be careful, still get pain coming & going in legs etc, but not constant daily; similarly with elbows & shoulders, neck, jaw & torso etc. Fingers seem to all crack inside doing things, still can't make fist and grip properly & still get trigger finger etc. FIngers & hands seem to hurt chronically whatever I do (had this feature many years).
It feels like 'stuck halfway'. I still have bad fingers & hands, though am doing a few tasks, though it hurts to do nearly everything which is pretty restricting. Overall, I'm a long way from where I was before a year ago, but am definitely a lot better than last year in terms of the RA inflammation. I've since been told by the rheumy the rest of it is Fibromyalgia and Osteoarthritis. The other symptoms I seem to have developed permanently now - due to fibro, osteo, damage from the RA, side effects from the Filgotinib, unspecified 'chronic pain' etc. - are:
Fatigue, body feels tired nearly all the time (can't seem to get up till lunchtime, though up late & struggle with sleep);
Brain fog!; lose concentration, go blank & time seems to sometimes pass in a flash without me remembering thinking or doing anything!
Fuzzy head and most days have some left-sided nasty head pains;
Half-tight chest & chronic cough;
Breathless at any slight exertion including bending down;
High Blood Pressure (regularly over 140/90 to 160/90 with pulse usually 80-100). At rest in chair. Need to see GP about it. Feel heart jump suddenly quite often too. I don't drink or smoke or take other drugs & although don't always eat very well, no other obvious reasons for increase. So could be the Filgotinib. All my life my BP was excellent at 100/60.
Thick throat & threatening sore throats (I take large boost of Vit C when it comes on);
Sore gums;
Unsettled guts;
Unpredictable moods;
Very stiff after being immobile for short period;
I'm still struggling with basic things like dressing, washing, limited cooking and so on. Still one step at a time on stairs, but at least am doing more so not as dependent & can help my chronically ill partner a little bit again & help with a few light duties on the farm with the busy lambing eg. supervise some adoptions & feeding lambs on bottle though even that hurts the hands so much!. Before last year I was doing the full time heavy work.
I don't have the extent of agony in bed where I couldn't turn or move without excruciating pain. I still have pain turning, but not the same level. Appreciating that so much too.
So - largely very pleased & relieved at the effect of Filgotinib, even though I feel I've reached the level at which I won't improve more, which is well below what I was, but have to keep trying and get used to it. The rest of it must be due to fibro, osteo etc., though still have inflammation in fingers. I'm SO relieved though that I'm not in the absolutely appalling state I was in a few months ago as that was completely unsustainable. At least I have - some - life back, even if it hurts to do the things I can do - that's the New Normal!
Really pleased to hear you're doing well Mac. We'll keep updating on here now and then. I feel it's a big support to know there are others with similar issues - and with you being on the same drug. Hooray 😊
As you've only been 8 weeks on Filgotinib, you could well continue to improve over the next couple of months. Will be interesting to hear how you are after 4 months, the stage I'm at 😁
Go well Mac & best wishes
Blodyn
😊💖👍
Hello, so good to know you have had some positive changes with Filgotinib hopefully as time goes on you may be able to build your muscle strength and stamina….love opening jars again!
Thanks so much Pastels. Yes, that's the aim to build up again. There are certain things that it's wonderful to be not having to rely on someone else to do - the jars included, especially honey jars! (though could never do it without this de-vacuum contraption & only then using palms with cloth, but that's fine). Won't go into every little thing, but a lot of things still hurt to do & most things are a real struggle - but at least able to do more hooray; Go Well!
P.S. I can open some jars now too! using a device a kind friend gave me to pop the vacuum - then the lid I can usually manage with a cloth on it & using palms now fingers 😊 Yippee!
So pleased to hear that you are feeling better taking Filgotinib. Like yourself it’s the feeling of energy that is just fantastic. My joint inflammation is much reduced and pain much less.I’ve had to stop taking Filgotinib twice once when my white cells dropped a bit low and another when I had a bit of a chest infection and laryngitis. Now I’m back taking my regular dose and feeling the benefit again. I could feel the RA creeping back with just a weeks break. My liver function test was a bit raised while I was ill I’m hoping it will resolve, I so want to stay on this drug!
Thanks so much Pastels. Yes, it's such a relief to have improvement! I just wish it didn't feel as if I've stopped halfway, as still a long way off 'normal', but much of the rest of it seems to be mainly fibromyalgia & osteoarthritis & some damage done with probably a bit of the RA still. But not complaining! That's really interesting to hear that you felt things worsening within week of stopping Filgotinib....I was wondering myself how long it would take to start feeling more pain & inflammation again if I had to stop it, as likely to have to stop it when having some tooth extractions soon. Also interesting about the white blood cells. But SO glad it's working in some way for us. Long may it continue. Will post again when something else to say & look forward to more positive feedback from you too 😁💖👍 Take care xxx
Hi Pastels, I can appreciate why staying on this is so important. I hope the energy boost is a feature of this drug for many folk - it makes such a difference to overall mood and quality if life, even if joint pain doesn't disappear entirely.Helpful for us all to know how your bloods have fared on this too.
I've had to stop filgotinib (and methotrexate) since last week because covid finally caught up with me, and I can already feel the pain and stiffness returning in my hands and fingers...it's such a fine line between health and illness. I was due bloods too but everything must wait for the covid to pass- hopefully it will. I qualified for antivirals so im hopeful I'm getting through this without any serious complications.
Hope there are others making progress with filgotinib too ❤️👍
So sorry to hear you have Covid, hopefully you will be ok with the antivirals, seems almost inevitable for all of us. I will let you know about my bloods, I’m speaking to the rheumatology nurse tomorrow (on the phone) so I’m presuming I’ll have some done.
Could I ask how you go about getting anti virals if you become covid positive? I’ve no idea….
It’s taking time for the pain, stiffness to reduce since restarting Filgotinib but I can feel the change….
Hi PastelsSavour the positive changes!
For antivirals - I called the research team and my Consultants secretary....left messages....heard nothing after a few hours but googled meantime and decided to contact NHS inform for advice. They were really helpful, took my details and referred me on for case review. Next morning I got a call from a pharmacist, they'd already reviewed my notes. They asked some more questions then arranged for my local pharmacy to deliver the oral meds that day. Got them a few hours later. That's good service!
VERY grateful for the NHS.
I've have no real side effects from them and I seem to be getting better, slowly but surely. Who knows what difference they've made but glad to have had the chance not to find out how I'd have fared without them.
Will be glad when it's over though, and back onto my rheumatology drugs...fearing I'll lose the progress I'd made, but I suppose compared to what covid could do, small price to pay.
Wow - great service indeed! So glad that worked out well at least!
Really hope you feel better soon Mac & back on Filgotinib - take care X
Thanks Blodynhaul, think I'm getting there. You take care too! X
I'm so glad to hear you've had some more improvement too. I wonder if you feel just a little more mobile if you'll be able to build up some muscle tone again around the sore joints? I'm sure that the chronic pain causes so much muscle wastage and weakness in a very short time, which just compounds all the joint/ other issues.
The pain you describe from last year sounds similar to how I felt before any treatment started, and it's such a distressing place to be to feel you've lost so much independence and have that all over 24/7 pain. The not being able to roll over in bed brought back some hard memories!
But good to know it's just a bit more bearable all over. Got to take the gains you can get.
I can't imagine having the work of lambing while coping with RA, Osteo, and Fibro 😱 🐑 That's hard graft at the best of times!
I hope there's still some room for improvement for all of us. Take care of yourself...and keep going...and easy on the jar gymnastics 😂 And please do keep in touch with updates when you can Blodynhaul. 🙏💪
Ha ha, thanks Mac - you made me smile! Yes, it's great both of us have improvement, very welcome indeed. You're right about the muscle wastage, amazing how quickly that can happen. Yes, I'm trying to build some tone again with light physio exercises & walking when up to & doing what tasks I can, even if they hurt and are a real struggle. It's the only way to build things up, to use them, as you said - things compound otherwise, as they did, but doubt I'll get back to how things were.
Wouldn't have wished that level or endless pain on you, but feel glad someone else knows about it too! (Funnily, not being able to scratch was (still is) one of the most irritating things as agony on the fingers. I use a long spaghetti tool held in base of thumb/palm!)
Very lucky we have help this time with lambing, couldn't do it otherwise, but even just feeding lambs on the bottle, trying to grip causes red, sore hands; put it between the knees sometimes, or hold in both palms, though the others try and suck the fingers ha ha. Standing over adoptions isn't bad as can usually lean on the pens as for some ewes they'll let the lamb suck just by your presence, unless need to corner the ewes or turn them (a no-no now). But so grateful to be doing even a little bit. Usually I would have been doing all the heavy feeding work filling/loading/dispensing, driving the bugggy everywhere, & lifting animals & sorting problems etc.
Thanks again Mac. Will update again - and look forward to hearing your progress - Good Luck! Blodyn xxx
I am due to be starting Filgotinib in January and have exactly the same concerns. I was on CIMZIA for 4 years, which put me into remission. Flaring started after getting covid in 2021 and the CIMZIA didn’t seem to work as well. Was put on Sarilumab in Jan 2022 but white blood count dropped to dangerous levels. Despite this I had to try it twice more before rheumatology team stopped it. So I spent most of Jan/Feb and March shielding. ☹️
Have spent the whole year in pain and have had knee drained twice/steroid injection. Now it’s been suggested to have filgotinib, so I’ve had one shingrix vaccine and waiting for the second early January then I’ll be starting it.
My concern is that it’s not been around for very long and the long term effects. I don’t feel I have much choice tbh or an alternative option. I am very worried about starting it.
Hi Quinn, very sorry to hear about your latest treatments causing issues and not working. I feel torn with Filgotinib (FIL)! - I'm hugely grateful it is doing a grand job with my RA/RD (been on it 12 months nearly) after being so terribly ill & debilitated all last year. Nothing else worked, so it felt like a miracle that FIL has worked & I feel so glad the Rheumy put me on it. It gradually improved things over a few months & from early on I felt signs of improvement.
BUT - I continue to also be concerned like you about the long term effects of it. I'm a long way from the fitness I used to enjoy 2 years ago. Stuck with chronic breathlessness & cough from only slight exertions, chronic bad & weirds heads feeling like a stroke coming (!) & put on huge amount of weight. Other things like loose bowels (but at least regular), high BP, occasional severe itching, dental problems, over-sensitivities, weird body temperature control, poor sleep etc.
Hey - sounds like I'm putting you off! Not intended. Like everything else, it must be different for everyone - and even though I think these symptoms are probably due to the drug, as you imply, very little is known of its effects over time - so yes - also worried. If I come off it, I can't contemplate going back to what I was last year. But staying on it, these already-bad effects could worsen and be really serious. I keep failing to call the surgery in time in the morning to see the GP to address the main things & also the breathing tests ordered 6 months ago haven't happened so must chase; would hate to have ILD or even pulmonary fibrosis...Due to the breathlessness I can't burn calories so the weight is out of control!
Our dilemma sounds like that of many folk on this forum - the balancing act of Benefit:Risk and so on. I do have hope that the chronic effects I have (that could be a combo of damage from the RA/RD last year and over years plus the FIL) can be addressed and can improve. Also banishing thoughts of the FIL stopping working too! I'm seeing the Rheumy next week so will tell all. Otherwise, keeping a circumspect open mind - which I'd advise you to do too (sorry, that sounds like lecturing you!). It may work brilliantly for you without any side effects! Wishing you all the very best of luck with it - and would be grateful if you could post again once you're on it & over time. It's great to have fellow people on the same thing to compare and support each other. Go Well xxx
Hi,
I’ve been taking Filgotinib 200mg for about 18 months and I’m so pleased I started, my RA is so much better. I can almost feel my body trying to flare but apart from a bit of hand joint pain I’m almost pain free. The best part of feeling well is my energy levels they have gradually improved over the past months. I have to say I’m not worrying to much about long term side effects just enjoying the time I have now.
Really hope you find Filgotinib as good for you as it has been for me.
Thank you Pastel, that is really good to know and pleased it’s working so well for you. Your words are encouraging. Fingers crossed! 🤞🏻
Great to hear that Pastels! Same for me with Filgotinib working for my RA/RD - marvellous compared to last year , but have other debilitating chronic things that came on & not good at all, which not sure if due to FIL, or other reasons. eeing rheumy this week. But keep well - all the very best!
I really hope it all sorts, so difficult to know what’s causing what….pesky RA can be so deceiving, let’s hope you can continue and the other debilitating things can be resolved in some way.
The very best of luck🙆🏽♀️
Thank you Pastels. Take care & we'll all catch up again before long!
Oh thank you so much for your reply! I’ve never been on a forum before and no one I know has RA so feel a little alone with this over the years.
Up until this year I have been happy with everything my rheum team have done and still am tbh, as I know they are just following protocol. I asked to go back on CIMZIA this year and give it more time but have not been allowed to because it wasn’t effective. Consequently funding wasn’t approved. ( However it was taken very irregularly last year because of covid vaccines, illness and covid itself so I don’t think it had a chance to get going in my system.) FIL appears to be my only option and I’m very, very anxious about it. I don’t know what else I can do. Having knee drained tomorrow at hosp and will have another conversation about it with rheum nurse but I feel it’s already been decided for me.
I hope your side effects ease and settle down. Thank you for your honest comments. It’s really helpful. I’ll be in touch when I have more jnfo. x
Thanks Quinn, I'm also so grateful for NRAS forum as I've never had anyone to talk about it or to discuss it with or learn from others directly. I do feel less alone & that this support and care is there, so hope you'll feel that too now you've joined. Yes it's so hard to know what's 'best' all round for us & I also felt going on FIL was decided for me too. I was put on Adalimumab last year when I was at my worst but wasn't given a choice (& it didn't work). I did have it out with the Rheumy & actually feel it the decisions had been right after all for me to be tried on ADAL then go on FIL as nothing else worked. It's that balance ofPros and Cons, but sometimes we have little choice when other things don't work. At least you have the awareness and should be carefully monitored on FIL. These JAK-inhibitors like FIL seem to be 'last resort' treatments but at least there seem to be a lot of types of these treatments now, or so I like to think it feels better to still have options! Is it RA/RD you have? & is it very active and affecting many joints or particularly bad with your knee ? Don't worry to answer now, but we'll have to try not to worry as, even though FIL is relatively new and unproven, it sounds very 'successful'...We shall see! Take care QUinn X
Thank you Blodynhaul , you are right, a support network of people experiencing what I’m experiencing is so good. My rheum nurses are really lovely and great at their job, but they don’t have to take these horrible meds so I’m not sure how sympathetic to my concerns they actually are. I think I must get on their nerves with all my questions and anxiousness!
I have had RA diagnosed since about 2004. Was mostly under control for a long time and relatively mild (I think!) . But since having covid it has come back with a vengeance. Feeling very old and decrepit! I’m only 57!
Mostly affecting both hands/fingers and one knee. Both wrists are fused. I suffer from obvious constant RA pain and weakness in both hands, limited movement due to wrist fusing and as steroid injections wear off my knee blows up like a balloon and movement is very painful/keeps me awake at night. Looking forward to getting knee done tomorrow which hopefully will last a few months. 👍
Thank you for your kind comments.
Thanks Quinn. We sound similar regarding asking loads of questions! agree it's hard for others to really know how it feels. I've never been an overly outwardly anxious person, but this RD has certainly did that to me last year & still does, I think as it physically made/makes me feel so vulnerable & frustrated.
Quite like you too I was diagnosed in 2000 after 3 years without diagnosis - and I'm also 57! a lot of hands & wrists like you over the year, but so lucky I don't have fused wrists. All other joints and connective tissue at some stage or other in different combos, though last year was like everything at once. Your knee sounds dreadful. Hope very much it will be better after having it done - Good Luck with it & everything else X . No pressure at all to write all the time at all, but at least we know we can post on here & people understand & can empathise 😁💖👍
though not on your medication Inam on Baritcitnib this is a Jak too. By the time Inwas offered this it was because of awful side effects of many other standard meds. It is anxious trying new medication and trying to stay on it without being ill etc from other issues BUT I kept going and finally this one works on many points for me. Not perfect but definitely better than where I was before.
I work on the basis I need some form of medication to Keep the RA at bay if possible so I keep trying new meds.
Big hugs
Thank you Deeb1764. It’s good to know it’s working for you and much like you, I definitely feel RA is getting a hold on me without some meds to keep it at bay.
Do you have any horrid side effects from your JAK?
I’m going to list another load of questions to ask the nurse again in January, before I start it and will see how I feel about it then.
Take care
no nasty side effects at all which after some hellish ones before it’s been fab! Does not do every detail of RA but at least I can get this medication in me for a change!
Hi Deeb, so glad Baricitinib is working pretty well for you. Agree with you about feeling the need for these meds. Each time over the years when having to stop the meds I've actually kidded myself that the RA/RD has gone & won't come back - but of course it does, with avengeance!
Hello Everyone,
Hope you are feeling well today.
I just come accross this forum and wanted to share my experience with Filgotinib.
I have had ulcerative colitis for over 20 yrs. I had had some pretty rought times, as I am sure you have, too. My last relapsus happened in early 2018, by then I was steroid-resistant. That's when I got lucky and enrolled into a placebo-controlled Filgotinib clinical study. The first couple of weeks we received the medicine (later learnt it) and I was feeling much better in less than a week. Then, they must have switched me on placebo, as quite suddenly, my symptoms returned. I got even luckier then: I was moved into another group of patients who received the actual medicine and got well in a short period of time. This lasted until March 2024 when the study ended for me and now, after about a month, starting to have some light symptoms again. 
I am currently waiting for an appointment to a gastroenterologist)
As for those 6 years: they were the best years of my adult life. No symptoms, no pain, no diarrea, much more energy, and confidence, and finally, I was able to make plans again! I had no side effects and never felt better! So, if you are suffering and having pains with this condition, please don't hesitate and ask your doctor if this medication (I believe it is branded as 'Jyseleca') is available to you where you live - it's definitely worth a try!
Wishing you well.
Dental extraction
JAK inhibitor 
JAK
Filgotinib 
Has anyone tried Jyseleca?
