Jak inhibitors: Baricitinib, / olumiant Has anyone... - NRAS

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Jak inhibitors

Javea profile image
19 Replies

Baricitinib, / olumiant

Has anyone tried this? If so, what side effects have you noticed?

Thanks

Vivienne

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Javea profile image
Javea
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19 Replies
KittyJ profile image
KittyJ

If you type that into the search box and filter for NRAS then all the posts about them will come up 😊

Fang67 profile image
Fang67 in reply toKittyJ

Thank you

wishbone profile image
wishbone

Headaches at first, which ceased after stopping baricitinib for a week as advised by rheumy. A sinus infection, which was probably due to baricitinib. While the worst of that went after a few weeks, the sniffles and occasional mild sore throats have continued. Worth it though as the 2mg of baricitinib I take is doing a reasonable job of controlling my RA.

Good luck with it.

Madmusiclover profile image
Madmusiclover

It’s a marvellous drug. Leaves you open to upper respiratory tract infections. When you get one you have to come off the drug whilst you get better. This has happened to me twice since June 2019. Avoid any child with chicken pox as it makes you prone to shingles. After trying 5 drugs, this is the first that has worked. A miracle and worth the side effects. Good luck!

wishbone profile image
wishbone in reply toMadmusiclover

Do you continue to have sniffles and slight sore throats after your URTIs have cleared?

Madmusiclover profile image
Madmusiclover in reply towishbone

No, though last time doc gave me ventalin inhaler at end to clear something up. No idea what! I used it for about 2 weeks, then wheeze disappeared.

wishbone profile image
wishbone in reply toMadmusiclover

GP gave me a steroid spray. It did help the infection which lasted several weeks and was pretty unpleasant. The thing is it doesn't seem to have cleared entirely. My GP reffered me to ear nose & throat who I saw last week. I was given the all clear and thankfully there was no need for a camera or whatever to be shoved up my nostril! :-) Fingers crossed it doesn't come back and I have to stop baricitinib again.

Madmusiclover profile image
Madmusiclover in reply towishbone

Indeed. Stopping is the worse thing. Might try getting back on mine tomorrow. That’ll be 12 days since I stopped. Wrists and thumbs starting to play up! Good luck. On balance I’d rather deal with side effects than be stuck in a wheelchair!

wishbone profile image
wishbone in reply toMadmusiclover

I've been having frequent prolonged headaches this past couple of weeks, which could be due to baricitinib as I had a spate of them before as mentioned above. That was over a year ago. I would stop it for a week as rheumy advised back then, but I've had to stop baricitinib a few times for different things over the past 6 months, so I don't want to risk coming off it again and it fails to work when I restart it, and be stuck in a wheelcair like you say! Besides the headaches are not so bad this time.

Good luck to you too, and look after yourself.

edit...I love my music too! There's rarely a day goes by without me playing some tunes for an hour or two...helps keep my sanity! :-)

Madmusiclover profile image
Madmusiclover in reply towishbone

👍

Madmusiclover profile image
Madmusiclover

Also no medic has heard of it! Be ready to explain!

wishbone profile image
wishbone in reply toMadmusiclover

None of my GPs, or a ear nose & throat consultant I recently saw have heard of it.

Angjoplin profile image
Angjoplin

I'm just over a week in. Slight sickness but okay other than that. No positive effects yet, but its early days.

Madmusiclover profile image
Madmusiclover in reply toAngjoplin

Give it 6 weeks.

Javea profile image
Javea

Thank you everyone.

Leics profile image
Leics

I’m on baricitinib although I have a virus again my 3rd so not taking them at present. Have to say this drug has been a game changer for me no side effects and when I’m well enough to take it it’s fab. Have to add I’m severely immunocompromised so infections of viral and bacterial aren’t a surprise. Good luck hope it works for you.

RobbieM profile image
RobbieM

I have been taking it for over a year. I have had no side effects. It works very well for me and has transformed my life having tried 6 biological drugs with no real impact on my RA.

Please remember that every drug you are offered has a range of side effects so try not to worry too much.

wishbone profile image
wishbone in reply toRobbieM

Good to hear. :-)

Ruby2002 profile image
Ruby2002

I’ve been on it for several months. On the upside no side affects at all on the downside it doesn’t seem to work! I can’t take MTX however and I believe it works well in conjunction with this. Hope it works for you.

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