Exhausted - Is it the Baracitinib?: I am on week 2 of... - NRAS

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Exhausted - Is it the Baracitinib?

Shalf profile image
8 Replies

I am on week 2 of this drug. I have never felt such exhaustion. The dose is 4mg every day which I now take at bed time. This also occurred with the entercept injections but fatigue was less. On a positive note, the swelling, pain and other associated symptoms of RA are less. Hoping the exhaustion is short term as my body adjusts to this medication. As some of you were told with this drug you will feel like a new woman/man. Right now, I feel like a zombie! Early days I guess. Has anyone experienced this feeling of complete weakness and constant tiredness with Baracitinib? Just wonder if this could be a side effect or something entirely different causing exhaustion. Blood tests soon.

Suzie

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Shalf
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wishbone profile image
wishbone

Hi Suzie, I'm also on week 2, but take just 2mg daily after lunch. No signs of increased fatigue so far. Can't say I experienced any when injecting entercept either.

I'm definitely feeling less pain and stiffness but not to the same extent as when I was on entercept, then I really did feel like a new man. Then again I'm only on half the recommended dose of baricitinib. Still, I'm thankful for any amount of relief, and especially grateful for not having that horrible searing type pain that enveloped my hands, arms and shoulders every morning when I woke up.

Will the blood test be your first since starting baricitinib? I had my first one today and my second isn't due until Sept 28th, which seems like a big gap. Are your blood tests on a similar time scale?

Shalf profile image
Shalf in reply to wishbone

Hi Wishbone,

The blood test will be the first since starting Baracitinib then I have an appointment with Rheumy in October.

Like you, the pain and swelling is more controlled but the tiredness and weakness has increased. I am on double the dose you are so maybe that is a possible reason. It's very helpful to hear how others are doing with this as it being a fairly new biologic.

Thanks

Suzie x

wishbone profile image
wishbone in reply to Shalf

I also see my rheumy in October.

I still need to take regular pain relief but have reduced it slightly...I'm still on a high dose of tramadol but have reduced my daily dose of paracetomol from 2 to 4 tablets per day...well it's a start! :-)

Changing from 2 to 4mg of baricitinib would very probably be more effective with my RA, but there's little chance of that happening as I'd rather put up with a bit more pain than invite any possible side effects like you appear to be having. Even worse, I could be opening myself up to a serious infection, which I seem prone to when on RA meds.

Let us know what your GP has to say.

Darwin profile image
Darwin

Hi Suzie I too am on baracitinib I’m on my 5th week and for the last few days i have felt like you described. I also feel not right but nothing I can put my finger on. Pain and swelling have gone down but I don’t know which is worse really,pain which I’m used to or feeling like crap all the time.

Jan xx

Shalf profile image
Shalf in reply to Darwin

Hi Jan,

Can totally resonate with you.

Feeling crap is a good and straight to the point way of describing it :D

Just listless all the time is no fun but thankful for the relief of pounding pain and swelling every day!

Are you on the maximum dose? It is truly frustrating when I go to bed that extra bit earlier to ensure I get sufficient sleep which turns out to make no difference to the way I feel. Seeing GP today and will discuss this.

Thanks for your helpful reply.

Suzie x

weymouth321 profile image
weymouth321

Just caught up - hope your blood results are all fine and within normal levels.

Are you still having fatique ?

Jessie x

Shalf profile image
Shalf in reply to weymouth321

Hi Jessie- hope you are well.

I got my blood results yesterday and they are all absolutely fine. Inflammation is low and I'm feeling happy about that :) Pain and swelling is calm which is very nice. The tiredness is still setting me back and is frustrating because with little pain my mind wants to get my skates on and do everything again but the body says a big NO! I am trusting it will all come together once I adjust to the Baracitinib over time. My Rheumy and gp said it's more likely the fibromyalgia is causing the fatigue and physio is the answer in resolving that so will do what I can in the meantime and enjoy the fruits of feeling half normal again :) Cholesterol was normal. Must be all the trout & salmon I'm eating. Going to turn into a fish shortly. :D - love it!

Suzie x

Banksian profile image
Banksian

I’m 62. Was On 4mg and felt like a zombie. Unable to function, fell asleep while with friends at a cafe! Nausea was bad it lasted most of the day. Reduced to 2mg a day and feel much better. Still trying to reduce steroids and pain meds.

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