Baricitinib (Olumiant) Dairy

[bernese1225]

I’m keeping a brief dairy while taking Baricitinib or Olumiant as some call it. With it being a new drug I thought it might be helpful to those curious about it. I know everyone reacts differently but thought I’d share my experience because I would have appreciated a little insight before I started it.

I had stopped Tocilizumab (TCB) at the end of September. I started to flare at the beginning of November, when TCB was out of my system. I started Baricitinib on 14th December. Please note this was the worst, most aggressive flare I’ve had in 4 years.

Diary for Baricitinib (Olumiant) 4mg (take 1 tablet in morning)

Day 1: Thursday 14/12/17

Swelling/pain especially in hands, wrists, shoulders, knees.

Mild nausea in afternoon.

Went to lay down at 3.30 in afternoon for an hour as exhausted, woke 6.20pm almost pain free everywhere but hands.

Pain returned following morning (not as bad as day one(

Nausea in afternoon through to next morning.

Day 2: 15/12/17

Worst of the pain is in hands.

Nausea in afternoon through to next morning

Day 3: 16/12/17

No nausea

Swelling going down but pain worse in hands/wrists when try to carry light objects

Day 4: 17/12/17

Same as day 3

Day 5: 18/12/17

Hands painful on waking. Tired

Day6: 19/12/17

Same as day 5

Day 7: 20/12/17

More movement in hands, stopped swelling but the swelling that’s there is not reducing. Hands/wrists very painful. Constantly tired.

Day 8: 21/12/17

Same as day 7.

Day 9: 22/12/17

Same as day 7, plus little finger going numb, swelling in joint not going down causing bad circulation. Feeling exhausted.

Day 10: 23/12/17

Exhausted. Hands very painful when lifting light objects. Started wearing wrist splints for bed.

N.B: Next update in 10 days

[oldtimer]

It's a good idea to keep a diary of your symptoms and signs as it is so easy to forget what you felt like when you get better (or worse!). There's the app advertised on this page too that can help with that if you're inclined to keep records that way.

[bernese1225 in reply to oldtimer]

Thank you, I’ll check it out.

[Hidden]

That's really interesting; this was lauded as latest wonder drug at recent patient rheumatology conference i went to. Do you think above were symptoms of latest flare or drug side effects?

What i find so depressing about all the meds we take is not only that they don't seem to totally cure RD symptoms and each one takes months for effects to kick in but they invariably make you feel nauseous. Sick of feeling sick, and tired all the time, to the point where i didn't do metaject this weekend because I want to have good Christmas Day and dinner lol! Hope it starts to work soon for you, Happy Christmas 🎄

[bernese1225 in reply to Hidden]

Hi Kerena, I think the nausea was definitely the meds and increase in prednisolone. The tiredness possibly a combination of both meds and recent flare. The meds have definitely stopped synovial fluid increasing any further as swellings have now reduced. However, the fluid that was already in my wrist and finger joints is still there. I think the flare was so bad it’s going to take a while to sort, I just wish the pain would ease. Thank you, Happy Christmas to you too 🎅🏻

[Hidden]

Poor you, hope it eases up a bit tomorrow; it's so difficult to tell what's causing what. Hope it works for you eventually, happy xmas🎄

[Ryka]

Dear Bernse,How are you now? Are you Still on baricitinib?

Thank you for writing about your experience. There is not much available about it. I recently started baricitinib, 3 days ago. I have nausea, rightness in shoulders and I am sleeping a lot. Like 12 hours...

Following your channel.

Regards and Happy New 2023

[bernese1225 in reply to Ryka]

Sorry Ryka I only just saw your comment. Yes I’m still on Baracitinib and it’s still working for me. It did take a while for it to start working at the beginning but I’m glad I stuck with it. I hope it works for you too, I know everyone is different. Let me know how you get on please and good luck 🍀

Happy New Year