1st dose of Baricitinib : hello, Just having a mild... - NRAS

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1st dose of Baricitinib

Inanotherlife profile image
22 Replies

hello,

Just having a mild panic now I’ve taken my furst 4mg tablet and looking for a bit of reassurance/advice from fellow ‘users’ please….

When could I expect to feel its efffects if it works? Any time of day you’ve found best to take it?

I’ve read the side effects, all the usual scary stuff in there but if anyone has had experience of it causing blood clots, how long has they been on it for?

I’m on HRT and the leaflet says it increases the risk further.

Anything else, you’ve learned with it?

Thanks in advance x

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Inanotherlife
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22 Replies
Inanotherlife profile image
Inanotherlife

’first’

Madmusiclover profile image
Madmusiclover

Don’t panic! It worked for me within two weeks, I thought a miracle had happened. I too am on HRT. I have no side effects on a daily basis. I don’t think it matters when you take it. I happen to have mine around supper time. Just watch out for chest infections. I had two in first year but none since. I’ve been on it for four years. I love her. After 5 ineffective drugs it was a life saver. All drugs carry risks but I’ll take quality of life every time, No medic has ever mentioned concern over me taking it alongside HRT. Good luck. Hope it works for you.

Deeb1764 profile image
Deeb1764

been best drug for me went thro 5 others and this was the first one I had no adverse reactions which was a huge relief. I tend not to read the leaflets info as every medication including paracetamol have the bad stuff so I tend to say if it’s working I am happy.

How long - we’ll it took me a while to be on it without a chest infection so I think from memory approx 4 weeks noticed small changes and by 16weeks blood work showed reduction in CPR.

MuppetBaby profile image
MuppetBaby

I noticed an improvement within 48 hours. I had no significant side affects either. Had a few issues with skin abscesses but they can’t pin it down to Baricitinib being the cause completely and this seems to be resolving now 😊

J1707- profile image
J1707-

it worked for me almost immediately. Wrote a post about it . Unfortunately it stopped working after my first covid vaccine. Such a shame I was doing brilliant on it no side effects ..Good luck

Inanotherlife profile image
Inanotherlife

Good to know it worked but sorry to hear it stopped doing so. There really seems to be no rhyme nor reason as to why they stop working or some work for one person but not another. Maybe a coincidence but the Simponi seemed to stopped days after a pneumonia vaccine.

HevsK profile image
HevsK

hello, I started Bariticitnib end of August last year and can i go honestly say it’s the best medication I have ever taken in the 40+ years since I was diagnosed. I felt so much better after just 3 or 4 weeks and that’s after 10 years on Tocilizumab and 5 years on Enbrel! I’ve had a few health issues since starting it, TIA and currently suspected Thyroid cancer, but they are coincidences and not blamed on the new med. What is has meant is that because the RA is under control I am better able to deal with new issues. Please don’t overthink it, hopefully you will get the same benefits from taking it and feel so much better within a few short weeks x

wilbertjellyfish profile image
wilbertjellyfish

I felt like I had mild flu as a permanent feature on it. Kept blaming other things like COVID vaxx but after four months had to stop it. Hope it works for you.

Inanotherlife profile image
Inanotherlife in reply towilbertjellyfish

Thank you. Sorry you had no success with it. I feel like I’ve got flu without the respiratory symptoms when the RA isn’t controlled and it’s horrid so I sympathise.

Inanotherlife profile image
Inanotherlife

hello and thank you for your reply. It’s good to hear it’s working for you but I’m sorry to hear you have other health issues…

40 years is a long time with RA, sometimes my 10 years feels like a hundred! May I ask how old you were when diagnosed? X

HevsK profile image
HevsK in reply toInanotherlife

I was 25 when diagnosed and will be 67 in June x

Inanotherlife profile image
Inanotherlife in reply toHevsK

Bless you, 25 is so young, must have been really hard to accept at that age. I hope your other health issues get resolved for you soon. Best wishes x

Doodlereggie profile image
Doodlereggie

I started another JAK meds 6 weeks ago ,filgotinib,and was terrified of side effects on leaflet.however had no side effects at all,apart from slight lightheaded feeling for first couple of days which to be honest was quite pleasant!it started to work within couple of days,and now is like a miracle.this class of drugs are miraculous,and I think we are really lucky to get them.I take mine at night,which people on here advised,and with no problems.I have had ra for last 23 years,and have tried everything ,including Benepali for 9 months,but this is by far the best.As I am nearly 80 I was resigned to only getting worse,but am slowly getting my independence back,which has no price! Good luck and keep us posted.xx

Inanotherlife profile image
Inanotherlife in reply toDoodlereggie

Lovely to hear your independence is returning and thank you for the reply. I’ve taken 2 now, both around 2pm. The only thing I’m noticing is a splitting headache. Whether it’s linked or not, who knows!

helenlw7 profile image
helenlw7

I’ve been on Baricitinib for over a year now. It started working in the first 3 weeks and I didn’t have any side effects.

Inanotherlife profile image
Inanotherlife in reply tohelenlw7

that’s good to hear and I’m glad it’s working for you, long may it continue!

helenlw7 profile image
helenlw7 in reply toInanotherlife

I’m still taking it but I feel it isn’t working as well as it did. My rheumatologist is going to change me to a different JAJ inhibitor, but not until I’ve had a knee replacement in June or July.

Slinkyminx profile image
Slinkyminx

Hi. I took Bariticinib for about nine months and had no side effects. I took it with food in the evening. Hope this helps.

Inanotherlife profile image
Inanotherlife in reply toSlinkyminx

Oh right thanks for the reply, did it stop working for you?

Slinkyminx profile image
Slinkyminx in reply toInanotherlife

stopped working changed to Filgotinib I had bad reaction to Filgotinib pneumonia then Macropharge activation syndrome. I have Stills disease

Inanotherlife profile image
Inanotherlife

thank you for your replies

Inanotherlife profile image
Inanotherlife

I’m not sure what to make of this..

Started Baracitinib on Friday and actually felt better on Sunday, like it was working. Reduced the steroids from 10mg to 7.5mg daily at the same time.

Today, I’ve felt terrible again, joint pain, achey and generally grim like when treatment stops working.

Could the Baracitinib have started to take effect and stopped already?

Feel a bit exasperated and down after having experienced a couple of good days.

Can anyone offer any thoughts? Thanks

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