Baricitinib update: I know a couple of us were starting... - NRAS

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Baricitinib update

J1707
J1707

I know a couple of us were starting Baricitinib around the same time so I thought I would let you know how I’m getting on.

It’s week 7 and I definitely have seen improvement with my fatigue/ brain fog and motivation problems they have all most gone . I still get the mtx hangover for a day and a half where I turn into rip van winkle. I’ve had a few swelling problems but generally doing pretty well there . Morning stiffness all but gone only my right ankle ( the one with the monster swelling) is holding me back . If I could get that sorted then I could plan upping physical activity. So far so good long may things continue to improve.

Oh I can now sit crossed leg on the floor, put on my knickers standing up and bend down to put on my socks. All little things but 😁😁it makes me happy.

84 Replies
oldestnewest

Great news especially as putting on your knickers has become easier! 🤪😂

🤣

That’s excellent 💗

😂😂 Brilliant but you're not saying you haven't been wearing any knickers all this time are you? 🤣🤣

J1707
J1707 in reply to springcross

😂😂😂No been wearing them , ripping them getting them on .. sitting down and kinda flicking them over one foot pull up to the Knees lift the other leg with hand and slide the other leg in .. a sight to behold 😂😂😂😂

springcross
springcross in reply to J1707

😂😂 You paint a graphic picture there J! 😂😂

Neonkittie17
Neonkittie17 in reply to J1707

That’s me every day!! 🤨😳

Yep, me too! I thought it was normal - haha!!😅

Lollybygolly
Lollybygolly in reply to J1707

Yup I know it! Would make a great YouTube funny seeing me try to get dressed. Tights are the worst!

J1707
J1707 in reply to Lollybygolly

Gave up on tights. 😁

springcross
springcross in reply to J1707

Me too! 😁

Ladies I have never laughed so much. I have gone though the same thing. Still do!🤪🤪

J1707
J1707 in reply to Empress30

Welcome to the knicker club 😉it’s very exclusive. Not everyone qualifies x

Kags1068
Kags1068 in reply to J1707

At least it's not the no-knicker club ......yet!😳😁

J1707
J1707 in reply to Kags1068

Mmm 🤔 I have a bit of class so I would be . .. all fur coat no knickers 😂

Kags1068
Kags1068 in reply to J1707

Obviously, I can tell you are a very classy lady! 😆 I love that saying, one of my mum's regulars.

J1707
J1707 in reply to Kags1068

One of the best ever .. that and nice but dim . My mothers favourite 😂

Kags1068
Kags1068 in reply to J1707

Yep, another good one there! 😉

springcross
springcross in reply to J1707

😂😂 It's turning into the naughty knicker club! 😂😂

J1707
J1707 in reply to springcross

I know it’s like Chinese whispers.. you never know where a post will go 😂

springcross
springcross in reply to J1707

😁😁

Kags1068
Kags1068 in reply to J1707

Somewhere that no one dares to venture, I think!😄

J1707
J1707 in reply to Kags1068

Have you noticed no men have replied 😂😂🤔

Kags1068
Kags1068 in reply to J1707

I had actually ........ seems like they are steering well clear of this conversation- haha!😁

Empress30
Empress30 in reply to J1707

Omg you are too funny! You made my day!🤪

Green230461
Green230461 in reply to J1707

Not like that in the movies! Fully agree I am able to put my tee shirt on now. I’ve been on for 12 weeks

J1707
J1707 in reply to Green230461

Take what you can .. it’s something x

ketiv74
ketiv74 in reply to J1707

LOL, You guys are too funny! made my day!

J1707
J1707 in reply to ketiv74

Gotta laugh .. better than crying 😁

😅

😱🤣🤣🤣

Oh that is good to hear and sometimes its those things we took for granted and just did prior to having RD that mean so much. Long may this continue! xx

This is so lovely, really happy for you.Long may it continue

Great news - onwards and upwards! 👍

J1707
J1707 in reply to Boxerlady

Yep that’s where the knickers are going 😉😂.. thanks x

springcross
springcross in reply to J1707

🤣🤣🤣

Kags1068
Kags1068 in reply to J1707

Yes, just remember when to stop otherwise you could get a tad uncomfortable!!😳

J1707
J1707 in reply to Kags1068

Bottom so big now most pants look like thongs 😳😳

springcross
springcross in reply to J1707

😮😖

Kags1068
Kags1068 in reply to J1707

Haha - over! Have you too got one of those hungry bottoms that likes to eat pants? They're insatiable!!🤣🤣

J1707
J1707 in reply to Kags1068

Yep .. the apple catchers are now cheese strings .. 😁

Kags1068
Kags1068 in reply to J1707

Eek! Sounds more uncomfortable by the second, and unfortunately, I know what you mean!!🤣🤣BTW, I'm so pleased the baricitinib is starting to have an effect. Brilliant news! The luxury of sitting on the floor! I haven't been able to do that since I was 15 - still miss it. Not been able to have a bath since then either (no, I'm not called Pig pen - at least not to my face! It is always a bit misty wherever I am though, perhaps it's not due to weather conditions after all)?!😂😂

J1707
J1707 in reply to Kags1068

😂😂thanks XX

😂😂😂😂🙏😂😂😂

How fantastic is that 🥳🥳🥳 Sitting crossed leg on the floor ... a far flung dream 🥰

J1707
J1707 in reply to bubblyalex

Only taken nearly 3 years. Almost worth the wait. 😁

bubblyalex
bubblyalex in reply to J1707

Lol ... It gives so much hope to us all. 🥰

My breakthrough moment was being able to tuck in the bed sheet without wincing in pain. I hate sleeping on a wrinkled sheet. (Wiping my bum easily was also good, but let’s not go there 😱)

Enjoy! And may it just keep getting better.

I know exactly what you mean!

I'm delighted for you 💐

That's excellent news! I'm right with you on the knickers front... you could've been describing my daily routine 😂 I've just completed my week 3 on Baricitinib and can also cautiously say that for the first time since diagnosis I've felt some improvement with general joint pain and inflammation that's not from steroids. I'm not quite at the sitting on the floor stage yet... but look forward to that immensely!

Can I ask, are you taking pred as well, and have you started to reduce the dose? I tried to decrease to 7.5mg from 10mg a couple of days ago and had a short but dramatic flare in the evening. So I'm not keen to try again for a while longer... Just wondering whether you're having better luck with it? x

J1707
J1707 in reply to WillowsMother

I take MTX as well but not pred I had a steroid injection 6 weeks before starting baricitnib. That’s worn off now so I think that’s why my tight ankle is playing up.. it’s my weak point. An appointment next week with nurse see where we go from there . Sort out the ankle I will be happy. Keep me posted on how your doing .. good luck with the pred so many struggle to get off it takes time but you will get there x

If you have been taking Prednisolone for a while trying to drop by 2.5mg may be too much for you. My consultant is only allowing me to drop by 1mg per month. I had a flare going from 5 to 4 and had to go back up to 6 for a month. Now back at 5 and will be dropping to 4 next week 🤞🏻.

Unfortunately I'm unable to tolerate the 1mg tablets as they're not coated and cause severe GI issues... so the best I can do is to alternate between 10mg and 7.5mg each day, and if that's too quick, I can do 7.5mg every third day. I find it very odd that nobody manufactures coated 1mg tablets, but hey ho!

How annoying!

HI WillosMother, one trick I frequently use when taking Pred, is put that little tablet inside gel caps. I use turmeric capsules one every day anyway, I just stick my pred inside it. It does help protect your stomach lining. Haven't had any heartburn or any GI issues since I started doing it.

I'll see your right ankle and raise you a right knee!! I have a feeling the worst/weakest joints are the ones that will get sorted last... It's amazing what having RA has done for my patience. Everything is so slow, you have to learn to adjust to your own new normal and not expect any improvements or they never seem to come... but when they do, it's a wonderful surprise! Great to have a Baricitinib buddy 😂😘

J1707
J1707 in reply to WillowsMother

Patience ... I’m now a sloth 😂😂 yep great when we can share the good and the bad xx

That all sounds very encouraging J1707, I’m really chuffed for you. Getting rid of the fatigue is a huge thing by itself, but being able to put your knickers on, well out of this world! Funny you should mention being able to sit on the floor cross legged, I was watching my 13 year old daughter doing yoga for PE at home yesterday, and trying to remember how many years it was since I had been able to do anything approaching the lotus pose! 🤣🤣

J1707
J1707 in reply to Monkeysmum

😂😂😂I can do the cow pose... well that’s the sound I make getting up 😂😂I use to be so supple .. a wooden plank has more bend than me these past 3-5 years xx

Monkeysmum
Monkeysmum in reply to J1707

🤣🤣 The most embarrassing for me is when I watch my 73 year old Dad playing with the kids and realise he is ten times more flexible than me!

J1707
J1707 in reply to Monkeysmum

That’s bad 😂

nothing like the morning hop and lurch putting on ones knickers!🤣

J1707
J1707 in reply to Deeb2908

Looks like we could start a new club 😂😂

So pleased for you. It's the small things that can make such a difference. Your mention of putting your knickers on standing up struck a chord with me as I would love to be able to do that. Keep improving.

J1707
J1707 in reply to Wobbies

Your day will come xx

Good news.I also am on my 8th week of Barictinib plus MTX and iv got my life back.

I feel so happy

J1707
J1707 in reply to tshae

Whey hey!!!! 🥳💥I’m delighted for you .

Oh my goodness - the conversation here this morning has made me laugh out loud and splutter over my Frosties! 😂

J1707
J1707 in reply to Soreknees2016

Laughter the best medicine.😂

Soreknees2016
Soreknees2016 in reply to J1707

Too true! 😂

I’m so pleased to hear this!!! 💗 I’ve been on this drug for 8 months now, I would say it took 6 months to feel the full effect. Im down to 2mg prednisolone now but I was on pred for a long time. I also take methotrexate and like you really feel sick for a day and half. So glad your getting some benefit. xxx

J1707
J1707 in reply to Claire32

Your making progress Claire . Little things add up . It’s not about the speed. It’s just getting there that counts..x

I am on two tablets of sulfasalazine too and omeprazole for my tum 😊

Interesting they are using toxi as a covid cure now

J1707
J1707 in reply to Green230461

I think they have tried a few RA drugs .

It is the anti inflammatory element that is working well on covid patients too. Whatever makes the world a safer place is good for me😆

J1707
J1707 in reply to Green230461

I think it could be a good thing for RA research . It’s certainly put RA at the forefront

Let’s hope so🌺

Oh I’m so pleased you’re starting to improve with the baricitanib. Great news to hear. I certainly hope you start to feel the full benefit very soon but sounds like you’ve made a good start. Glad you’ve been able to put your knickers on without contortions too that’s better in itself 😂.

This is great news and so lovely to read. Long may this continue for you. x

Thats really good to hear. Im just about to start it myself. RA really teaches you to appreciate the little victories in life - putting on your knickers standing up ranks way up there!

J1707
J1707 in reply to mhlmom

😁😁at it still makes me smile.. good luck hope it’s the drug for you. Let me know how the knicker putting on goes .

mhlmom
mhlmom in reply to J1707

🤣🤣🩲🦵I will 😁

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