Jakinib (JAK Inhibitors): Hello, my Rheumatologist has... - NRAS

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Jakinib (JAK Inhibitors)

NixieJ3 profile image
20 Replies

Hello, my Rheumatologist has recommended the new group of Jakinib oral meds for me. I wondered whether anyone here has been on them, if they have helped your symptoms and did you experience any side effects. Thanks.

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NixieJ3 profile image
NixieJ3
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20 Replies
Madmusiclover profile image
Madmusiclover

love my JAK. No day to day side effects whatsoever. Baricitinib. It was the 6 drug I tried and it worked. Good luck.

Amnesiac3637 profile image
Amnesiac3637

Was on Baricitinib for just under 3 years. Best drug I’ve tried in 33 years of RA. No side effects at all, a tablet (so out of system quickly if not tolerated), and it worked within days. It unfortunately switched off after I got Covid last Feb.

Had a short spell on Tocilizumab which was no good and have just started another Jak - Filgotinib - which has also worked within days, no side effects, another in tablet form and I have high hopes of this one too. I can already feel a lessening of inflammation in my hands which have been so painful and I am starting to feel better in myself which is such a relief after getting on for a year hanging on by the skin of my teeth and 10mgs of Prednisolone which has just made me hungry!

So, no side effects, in tablet form for a quick getaway and a quick mode of action from both jaks. If you start on a jak I hooe it works for you and you get the same benefits. One tip is to take the tablet at night so if you do have any side effects to start with they’re lessened by having slept through them.

Good luck!

Mmrr profile image
Mmrr in reply to Amnesiac3637

Interesting that Baricitinib lost efficacy after Covid. My toficitinib never worked so well after my Covid vaccination. I'm now on Filgotinib.

TerrilouiseS profile image
TerrilouiseS in reply to Mmrr

I’ve had the same with Humira after covid

gardens4 profile image
gardens4 in reply to Mmrr

Hi, that is very interesting as my Toficitinib is not working quite as well since my Covid vaccination about two years ago. The JAK saves me a lot of pain so I am hoping all will settle down as I have been over three years taking this medication after trying six others.

Teddyboy17 profile image
Teddyboy17 in reply to Amnesiac3637

Hi

I’m due to start Filgotinib shortly and very nervous. Are you in uk ? How is this going for you now thanks

Amnesiac3637 profile image
Amnesiac3637 in reply to Teddyboy17

Hi. Am still on Filgotinib though now on a half dose -100mgs daily- as my lymphocytes were too low for too long on the higher dose of 200mgs. I’m also 71 so anyone over 65 is advised the lower dose due to theoretical cardiac problems.

I’ve been pretty good on Filgotinib. Never had any side effects apart from slight light-headedness when I first started it (known side effect) but that wore off really fast. I don’t think it’s as effective as it could be for pain but that’s probably due to the lower dose. I have more energy and am less fatigued (though not completely) and it’s so easy to swallow a pill every night rather than injecting etc. Of all the drugs I’ve had - and I’ve had most if them - the JAKs have been by far the the most effective. Baricitinib was my absolute best but Filgotinib comes a close second.

Don’t be nervous about trying Filgotinib. My tip would be to take it last thing at night so if you do get any initial side effects you sleep through them. It leaves your system really quickly if you can’t tolerate it but most people on here who’ve tried it have pretty good experience on it. It’s much more targeted than most of the biologics so doesn’t mess with your system as much. Of course, we’re all different but give it a go and if it works for you you may find it a total game changer. I wouldn’t go back to any other type of medication now. Best of luck!

Deeb1764 profile image
Deeb1764

Took 5 other drugs before I was put on Baritcitnib and been so so easy compared to all the others. Well worth trying to see if they work for you!

Gladders profile image
Gladders

Month five on Baricitinib and much improved, the only thing it hasn't seemed to improve is the fatigue. Hope your Jak works well for you.

Mmrr profile image
Mmrr

I'm on my 3rd JAK.... Filgotinib, they have been by far the best meds for me. Easy to take, with few side effects. Certainly worth a try.

Chocnbags profile image
Chocnbags

Yes they are called Filigotnib I have been on for one year now and total changed my life , not had any side effects either

helenlw7 profile image
helenlw7

I’ve been on Baricitinib since last February and it started working almost straight away allowing me to use my hands normally for a long time. Unfortunately it stopped working just before Christmas.

Wannabeabago profile image
Wannabeabago

Anyone with sensitive guts had issues on them?

Good luck to you too

Madmusiclover profile image
Madmusiclover in reply to Wannabeabago

I have a very dodgy tummy and gut and no issues for me with Baricitinib.

I was on baracitinib few years ago. Had flu like symptoms most of the time on it. Shivery, lethargic, achy 6days out of 7. Hope it works for you but my symptoms were a recognized side effect

I took baricitinib for over a year. Didn’t do much for my RA symptoms but was the kindest to the rest of my body. (Skin, hair etc). I hope it works for you.

Karen12 profile image
Karen12

I’ve been on Baricitinib since last January and noticed an improvement within 48 hours. Unfortunately due to infections I kept having to stop and start and felt I never quite got the same impact each time I started.

I’ve now had a full 6 months without needing to stop them and my inflammatory markers are normal for the first time in many years (not that they were very high anyway). 😁

Pastels profile image
Pastels

hi I’ve been prescribed Filgotinib for over 18 months no side effects and a really great result .

Wishing you all the very best with your Jak inhibitor

Teddyboy17 profile image
Teddyboy17 in reply to Pastels

How long did this take to make you feel better ?

Pastels profile image
Pastels in reply to Teddyboy17

Really a couple of weeks and I could feel all my symptoms reducing. I believe it’s different for individuals tho. Good luck if you’re taking it or considering. Filgotinib has changed my life.

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