Can anyone on Baricitinib share their experiences of ... - NRAS

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Can anyone on Baricitinib share their experiences of it please

Faith4
Faith4
17 Replies

Hi all, I’m currently on 20mg of methotrexate etc which is no longer working for me. My rheumy is trying me on Baricitinib and I pick up my tablets tomorrow. From what I’ve read it sounds a little scary and I was wondering if anyone out there could share their experiences on that medication. I know we all react differently but I’d still love some insight from people. Thank you 🙏🏻

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Joodee

Hi, I started Baricitinib last April having been on Humira for 12 years when it just stopped working. I had an ESR of 120 in February and was in a lot of pain, could hardly get out of bed etc so the consultant thought that a new biologic was the way forward. After a steroid injection I started Baricitinib and it must have worked pretty much straight away because even when the steroid jab had worn off I still felt pain free and able to get out of bed, walk, do chores and live again. I haven't had any noticeable side effects although my ESR has not come down much.

As with all these strong drugs people's tolerance of them varies but Baricitinib has worked really well for me. Rather annoyingly well as I now have to do a PIP face to face interview whilst feeling fine, if I'd had to do the interview last February I'd have had to be wheeled in there!

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Faith4
Faith4
in reply to Joodee

Hi Joodee, thank-you so much for sharing. Pain free and able to live again, sounds wonderful to me. Hope it continues to work for you to.

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Mmrr

I've had mixed results with baricitinib, but definitely better on it than off.

It seems to be controlling my systemic issues of fatigue and feeling unwell most of the time, more so than my joints.

I have a sore mouth with it, but I have had a sore mouth with all RD drugs, otherwise no side effects.

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wishbone
wishbone
in reply to Mmrr

I must have cross posted with you MM as I did not see your reply until now. Hence I just referred to Jodee in my post.

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Faith4
Faith4
in reply to Mmrr

Hi Mmrr, thank-you for your input. Helping with fatigue would be an added bonus. Sorry to hear it hasn’t helped much with your joints though. Today’s day 2 on Baricitinib for me so fingers crossed.

Good Luck

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wishbone

Hi again Faith, :-) I'm glad Jodee replied to your post first as I've been having a bit of a stop-start affair with baricitinib this past couple of months so perhaps not the best example.

That aside, I've been taking 2mg of baricitinib for almost a year, and like Joodee, it started to work very quickly - within a few days, but a bit longer to properly kick in. It's no wonder med for me like enbrel once was but has had a positive effect on my RA. One of its pluses is it leaves the body much faster than other meds (within a couple of days apparently) if you have to stop taking it due to something like an infection, which can only be a good thing. I did have frequent prolonged headaches when I first started taking it, but rheumy advised me to give it a week's break and I was fine when I restarted it.

My recent breaks with baricitinib has been due to having leg ulcers treated and a prolonged sinus infection. The latter may be related to taking baricitinib as upper respiratory tract infections can be a side effect according to the leaflet provided with the tablets.

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Faith4
Faith4
in reply to wishbone

Hi wishbone, thanks for that. I didn’t know it could work so quickly and also be out of your system as quickly. I’ve learnt so much in such a short time thanks to everyone sharing. (Good luck at the unveiling) 👍🏼

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Leics

Hi, I was started on 2mg baricitinib almost a year ago this was my first treatment for RA for 6 years. Within a few days the inflammation I had was reducing and so was the pain, you could literally see that my knees were resembling a normal person but obviously slightly buckled because my RA affects my hips knees and ankles more than my hands. All I can say is it’s been a bit of a bumpy road for me but that is down to my immune system being so low sooner than the baricitinib. I have zero side effects from it and my dose has just been increased to 4mg. Unfortunately I am sick at the moment with a virus from hell which I’ve had for nearly two weeks so I’ve had to stop treatment until it clears. I must say though that I haven’t had an infection for almost a year so this is my glitch. Baricitinib is a game changer for me I’m walking much better and I’ve not used any ‘very strong painkillers for a few months either ( have to say I might have to start them again soon though) my experience of baricitinib is a good one works quickly and if there is a problem or surgery or something is needed they’re out of your system quickly but it’s the fastest medication for RA I’ve ever had. Good luck hope it works for you.

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wishbone
wishbone
in reply to Leics

Still have that virus then!...I hope it clears before too long.

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Leics
Leics
in reply to wishbone

Thanks wishbone you and me too. Driving me nuts can’t sleep 🤬 it’s a bad one costing a fortune in cough stuff lol. Probably going to have to bite the bullet and go back docs at some point.

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wishbone
wishbone
in reply to Leics

Sorry to hear that Leics, I absolutely dread getting a chest infection, especially with my lungs as they are.

Just been to see the ulcer nurse by taxi. Two minutes after I got in the driver started coughing and there's me sat in the front seat because it's easier than sitting in the back. :-O I went into extreme shallow breathing mode a bit sharpish and pressed my face up hard up against the passenger window! ;-) I headed straight for the toilet to wash my hands when I arrived at the surgery. I can but hope he just had a touch of bronchitis and not some sort of virulent infection like you have!

Honestly, I feel like a Howard Hughes germophobic clone on times! :-O

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Leics
Leics
in reply to wishbone

Haha I know what you mean. I’m so careful all the time. If I go out I wash my hands constantly, blow my nose too and carry antiseptic gel with me. Unfortunately you can’t avoid everything. This is driving me nuts though blinking cough keeping me up all night. Soo tired. Will keep my fingers crossed you keep healthy and don’t catch anything from the taxi. I’ve surprised myself and not picked up any viruses and sometimes people have virtually coughed in my face lol.

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wishbone
wishbone
in reply to Leics

I'll keep my fingers crossed for you too, mentally speaking that is.

I pray I haven't caught anything in that taxi. I've got more than enough going on with this stupid ulcer and my RA is getting worse after a week back off baricitinib. :-(

It's all sent to try us I suppose!

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Faith4
Faith4
in reply to Leics

Hi Leics, thank you so much for all the info.

Owww having a normal persons knees again sounds very exciting, how RA can change what you now find exciting in life🤣

I know we’re all different but it’s great to hear so many people say they haven’t experienced many negative side effects.

I’m certainly excited now to start baricitinib, whereas before joining this amazing group of people I was pretty nervous.

Thanks Again

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Leics
Leics
in reply to Faith4

I’m glad that som of us have helped you to feel more positive about starting baricitinib. We are all different and what works for some doesn’t for others. Good luck hope you get a good quick result.

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Ridgewaytwenty

Hi

I have been on Baracitinib 4mg since April and would say that it’s been a life saver for me, and I am now in clinical remission! Before starting B, I was in a pretty bad way, hardly able to function and so very poorly. I did ask to have the shingles jab before starting this medication, due to shingles being one of the side effects. Having said that, I can’t say I’ve had any other side effects from Baracitinib so far. Like you, I was very scared about taking Baracitinib but it’s been brilliant for me. Good luck to you.

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Faith4

Hi Ridgewaytwenty, wow clinical remission that’s fabulous news 😃.

I’m starting on 4mg of Baricitinib and still on 20mg of methotrexate so im sure between the two, lots of improvements are coming my way. I do wish I’d thought to ask for the shingles jab before I started 🤔.

Thanks again

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