hi I hade a rheumatology appointment last week where I was told that if I was a new patient at 65 I wouldn’t have been given baricinib as new guide lines were that because it could cause coronary problems or some cancers this risk is higher over the age of 65. I was given the option to half the dose to 2mg or come off it and change to embrel or rituximab that are not JAK inhibitors. I have had both of these before one didn’t work at all and with embrel I had lots of infections and ended up will a pleural effusion being drained from my chest. I have decided to try the lower dose and will see how I get on. Baracitinib has been the only thing that has worked for me after trying numerous biologics so I am feeling a bit low. Has this happened to any other 65 year olds.
baricitinib over 65: hi I hade a rheumatology... - NRAS
baricitinib over 65
Yes, I was offered a JAK at 64 and opted for something else - which didn’t work. So when I next discussed a change of drugs I had turned 65 so no longer prepared to offer a JAK!
It’s the new NHS rules plus with less severe be disease only 3 DMARD medications can be prescribed but I don’t know what happens if they don’t work and people like who’ve had a DVT or PEs won’t get JAKs anyway.
there was a very recent post about this if you look back you should find it or use the search box and filter for NRAS.
Yes; there is another post about this with a link to the guidance for medics. It can be prescribed if no other option. X
I'm 72 and been on Baricitinib for 3+ years. I stopped taking it a week ago due to a UTI and am really suffering with my RA. The Baricitinib hasn't been working as good as it used to so suppose I should contact rheumy, moreso with this JAK cardiac thing and having had a mild heart attack 15 years ago. Trouble is because I have recurring UTIs I'm afraid to try any biologics as I had a serious infection while on Enbrel years ago and was told not to take it anymore. Mtx and Hydroxy are also off the cards though for different reasons to Enbrel. One good thing if you can call it that, is I only take 2mg of Baricitinib because of the increased risk of infection a higher dose would bring.
I can really do without this added JAK risk and don't know what to do for the best.
Oh wishbone I feel for you. In similar position myself. They are suggesting Upadicitinib (as Bari not so effective) for me though first nurse I discussed it with got very excited about rituximab, but second nurse backed off that because of my heart issues. I’m going to push to see consultant. I also need a letter from heart consultant as rheumy hear I’m under investigation and panic!
Because Baricitinib was losing effect I tried Upadicitinib some time ago but had two UTIs during the few months I was on it. Whereas I never had a single UTI during three years I was taking Baricitinib, so went back on that. Only lasted six months this time before getting this current UTI.
I've just phoned my rheumy helpline for advice. The only thing I can think of is try going back on Mtx, which my respiratory consultant advised me to stop taking when I was diagnosed with Pulmonary Fibrosis 8 years ago. Not because Mtx would exacerbate the PF, but it could cause a different lung condition which may mask the progress of the PF.
I stopped going to the chest clinic about 5 years ago as the PF was stable and has remained so. I will suggest trying Mtx when rheumy return my call and see what they have to say. Other than that, and going by previous consultations, there's no more options other than soldiering on with 2mg of Baricitinib.
Thanks for your reply and good luck when you see a consultant.
It’s not great is it? Between a rock and a hard place.
Exactly. Rheumy nurse got back to me and is arranging a consultation with my rheumatolagist, either by phone or F2F.
They are clearly worried about the side effects of JAK inhibitors. My 17 year old daughter recently started a JAK inhibitor and they only prescribed it to her after taking a thorough medical history including asking about family medical history.
I'm 60 yrs and was taken off it due to new guidelines, offered infusions or other Jak inhibitors
I thought it was all JAKs ,the 2 she said they were offering people I had already tried embrel with which I had lots of infections and rituxamab infusion which didn’t work at all. I had years of different meds before baricitinib that either didn’t work or caused too many side effects. I will see how the 2mg goes before deciding if to come off it completely. Thanks for your reply.
Jan
I was told updated guidelines from US ( where it's originally from) states higher risk for over 65 yr olds just for this Jak inhibitors
Here’s the link: gov.uk/drug-safety-update/j...
I am 78 and have been on filgotinib a JAK for 8 months which is brilliant.I have been on the higher dose of 200mg but my rheumy has just decided to reduce it to 100mg next month,because of guidelines and age.I have been with him for over 20 years and trust him.It is a very difficult balance between risk and quality of life of course,and every med carries a risk.Been on prednisolone for over 22 years,and that carries a long term risk,osteoporosis etc.I only weigh 7 stone,eat healthily and try to stay safe mobility wise,so do all I can to balance thing up.The JAK has enabled me to reduce my preds and given me my daily life back pain wise,so I personally am willing to take the risk,if my rheumy agrees.Have tried methotrexate,hydroxy,high prednisolone,azathyioprine,and biologics over the years,and JAK is the miracle drug for me with no side effects so far.
Maybe you could ask about filgotinib,whether it has a lower risk for over 65,it may be so,I don’t know,worth a shot.!Good luck.
I am 69 and I was on Baricitinib. I also have had a heart attack and a triple bypass. However, after 35+ years of RA I have run out of effective meds other than JAKs.
Baricitinib didn't work for me and I am on Rinvoq (which is Upadacitinib but easier to say!) As my CHD is under control and I am on blood thinners, I can have the JAKs as long as I am monitored and stable. I believe a case by case decision is the right approach to making these clinical decisions. I hope they can apply some common sense to looking after you. Good luck
I’m under 65 but did have an acute coronary syndrome associated with Baracitinib 2 yrs ago. Like you I have had enbrel and it was totally ineffective. I’ve been ask to consider changing but resist. I argue that relapsing into flare with my joints will result in me sitting in a chair, putting on weight, inflammatory processes taking their toll on organs and increasing my coronary risks just in a different way . I said I’d rather die having a life than sitting in chair in pain. So I remain on it for now. The oral surveillance research paper that driving this change was published 2 years ago now jyst after my coronary. It was on Tofacitinib and extrapolated to the entire JAKi group so it makes no sense that others are being offered an alternative JAKi that carries the same risks.
I read about this problem,subcontracted Rheumy,the y rang me back.After a long discussion,as I'm 81,have a pacemaker was given the option,carry.on with 4ml,reduce to2ml or go on a Biologic.We decided due to my issues to try the biologic,I section every 2 weeks.(cannot remember name!!!!)I hope this will work as the Baricinib has worked well for me,but do not want an additional heart problem.
Hmm. I’ve been on Filgotinib since April on and off (due to dental problems and antib’s) and it’s a follow on from Tocilizumab (failed) and prior to that, Baricitinib for three years (failed). No mention then of any cardiac problems in prescribing Jaks so was happy to go on what my consultant says is my last resort as I’ve had every other drug known to science over 30+ years.
Slightly worrying now that NICE et al are taking fright over JaK inhibitors and cardiac risks. I am on only 100mgs daily reduced from 200mgs daily due to low white blood counts but not due to my age -71 - or my risk factor -10% for heart attack/stroke. No doubt there’s very careful monitoring being carried out now. As these are very new drugs with good safety profile but no longevity it’ll be interesting to see if they continue to be prescibed. I hope so as, like Doodlereggie, I'm doing very well so far on Filgotinib.
If all else fails I shall just resort to gin ( restorative) and dark chocolate (for my health of course…..) and abandon all these innovative but risky interventions in favour of the tried and trusted!
I am 72 and have been on 4mg baracitinib for 4 years It has worked very well for me and I was not aware of risks for cardiac problems but I was aware that it can cause raised cholestrol. No-one had any any issues with prescribing this for me at the time although previously I had never had enough joints inflammed at the same time to qualify for biologics even though half of my joints are destroyed badly. I have had RA for nearly 50 years and previously only had a few different DMARD meds and no other biologics and the baractinib has controlled my flares completely. As far as I know I have no cardiac problems so I will continue and hope for the best! We are all very different after all.
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