baricitinib (Olumiant)

[Kat1989]

Hi, I was born with RA, now 28, tried all medicine but unfortunately can’t tolerate a lot of them due to allergic reactions etc. My doctor feels the next step is olumiant, has anyone tried this? If so can you give feedback on your experience so far?

[Hidden]

I'm so sorry, but I've never heard of it. But I do hope it brings you some relief. 😭

[Kat1989 in reply to Hidden]

Thank you x

[aco2]

Hi! I’ve never been on this myself but my rheumy was talking to me about it this week and apparently it’s relatively new and my doctor reckons it’s going to be the standard of care within the next five years, even more than biologics! So hopefully it’s really good and effective!

[Kat1989 in reply to aco2]

Fingers crossed!

[Hidden]

Hmm, not too sure. medicines.org.uk/emc/medici...

[helixhelix in reply to Hidden]

Doesn't read that much different from other biologics when they first came out?

[Madmusiclover in reply to helixhelix]

It’s a ‘small molecule’ drug and works in a different way to older biologics.

[helixhelix in reply to Madmusiclover]

I meant in terms of its contraindications, common side effects and so on. Poemsgalore seemed to be querying whether it was good/effective but the article linked gave a very similar profile to older biologics despite it being a different class of non-biologic drug.

This is an old post, but interestingly the common side effect listed of lung infections does see, to be the one that people are having issues with.

[helixhelix]

FOund this report on it.....

ELi Lilly has won a nod from NICE for its anticipated blockbuster and Humira competitor, Olumiant, a modicum of good news for a drug the FDA rejected in April.

England’s cost watchdog, in final guidance, determined the drug was cost effective and recommended its routine use by the National Health Service for adults with rheumatoid arthritis whose disease hasn’t responded well to conventional disease-modifying antirheumatic drugs (DMARDs).

Reviewers said it is was found to be more effective than most DMARDs and as effective as Humira, the world’s best-selling drug. Lilly has offered the NHS an undisclosed discount to the NHS for the med, which has an average estimated list price in England of £10,501 ($13,000) per patient per year.

So fingers crossed it's the one for you.

[bernese1225]

I hope this helps...

I’m keeping a brief dairy while taking Baricitinib. 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 at the end of September. I started to flare at the beginning of November, once it 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 1)

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

[Kat1989 in reply to bernese1225]

Thank you, I’m glad to see the nausea started to wear off (not a fan of that s

on anything) sorry to hear your suffering in your hands that’s my weak area too I hope things continue to improve and the exhaustion eases hard to know if that’s part of the flare or medicines at times

[Hessie5 in reply to bernese1225]

Hi there - my consultant is changing me over to this product as my biologic injection is not working. Just wondered how are you getting on with it to date ? Is it working for you? My regards Hessie

[bernese1225 in reply to Hessie5]

Hi, I’m really happy with it. I felt that good I walked to dog too far too soon and triggered osteo in my knee. I hope it works for you Hessie. Let me know how you get on 😊

[Hessie5 in reply to bernese1225]

Thank you for your swift reply. I can see it’s relatively new, hence my reservation. Starting it in about 4 weeks - still on the injections Benepali. I shall keep you posted. All the best 😊

[vivgibbs]

I have tried it for one month similar symptoms to Bernice but add cold sores and mouth ulcers seeing double and not able to function properly doing daily tasks, sorry Kat but good luck 🍀 😊

[Felldweller]

Hi Kat1989, having just read your requests for any feedback from people using olumiant, go right ahead with it and hopefully get the same, almost immediate response as I did. I have been taking it, one tablet a day, for just 9 days and I already feel much more energised. My right knee, which has been a real pain ( in every sense!) has suddenly agreed to work again. My feet, which were really painful, are now cooling down and I can walk properly...or near enough! All joints feel so much better already AND I am sleeping better. Apart from the tiniest touch of nausea in the first few days, I have had zero side effects. I am hugely excited and hopeful for the future with this drug. I am SO much better already, so surely things can improve even more. This horrible disease has had me hobbling along with a walking stick when I was at my worst. Olumiant, even after barely a week and a half, is allowing me to dream of walking the fells again, up here in Cumbria. I really REALLY hope it works as well for you. Keep us updated. Felldweller.

[Pepperr in reply to Felldweller]

Hi just read your post and has made feel really positive my husband has has his worst flare up and has today started his treatment with this drug how is your treatment going looking forward to your reply

[Felldweller in reply to Pepperr]

Hi again Pepperr, thanks for your reply. Well, you never know what the next day is going to bring, do you? The olumiant/baricitinib was really, totally, magically working for me, my joints, my fatigue, the whole works. I felt great, until I noticed that the tinnitus in my left ear, caused by taking hydroxychloroquine last year, was getting louder. And louder. I started to panic, as unless you have tinnitus yourself, you cannot imagine how horribly disabling it can be. I was told to come off the olumiant immediately, which was a month or so ago now. The tinnitus has gradually receded, but not fully, and of course so have all the benefits of the olumiant. Back to square one. Am seeing my rheumy in a fortnight, so will have a good chat with him as to see where we go next. But I can do nothing but highly recommend this marvellous drug and even though we are all different, there is no reason why it shouldn't work just as well for your husband as it did for me. Best wishes to you. Felldweller.

[Hessie5 in reply to Felldweller]

Hi - thanks for sharing your story. I suffer from the tinnitus so shall see if this drug makes it worse. Took 1 tablet last night and am aware of the ringing in both ears. Hey ho as said going to take this drug for 7 days before I decide to do this naturally if at all possible. All the best Hessie

[Felldweller in reply to Hessie5]

Hi there. You have tinnitus? Ghastly, isn't it. I really hope that the drug works for you, without it causing further problems with the tinnitus. It most definitely made mine considerably louder, but we are all different in the way meds either do or don't affect us. Please let us know how things go with you. Good luck! Felldweller.

[Hessie5 in reply to Felldweller]

It’s not pleasant - these drugs certainly seem to make the ringing more prevalent. I shall certainly diarise this drug for all to review. Thanks for your response. My best, Hessie

[wishbone in reply to Hessie5]

Hi Hessie,

I've had very mild tinnitus for a number of years. Up to now it's been absent for the vast majority of time and even when it did occur it's was only briefly and not really noticeable unless I concentrated on it. I started taking 2g of baricitininb daily about 10 weeks ago and all of a sudden (today) what little tinnitus I had has gone crazy, ie...I've had it quite bad all day (now 9.30pm) bar for a 3 hour break late morning.

Much appreciated if you can let me know if your still on baricitinib and what, if any effect you think it's had on your tinnitus?

[Hessie5 in reply to wishbone]

Hi Wishbone - sorry to hear about the tinnitus, I suffer from this also and to honest I found it occurred more prevalent with all the meds I have been on. I have the awful buzz right now but think I have trained my brain to not focus on it to much. I notice it especially when quiet and now you have mentioned it the ringing is there. I therefore always have my radio on and prefer background noise. I was told there's no fix. Right now I am on 5mg of tofacitinb, but only take half that as everything feels off kilter taking the entire 5mg per day. Let me know how you are coping with the tofacitinib, feel free to reach out if you have any more questions. All the best, Hessie x

[wishbone in reply to Hessie5]

Thanks for that Hessie,

Looks as if I'll just have to do as you have done and try to train my brain to focus on it as little as possible. Either that or stop the baricitinib, and I want to avoid that if I can as it is helping my RA. It won't be easy though as it's a constant high pitched whine. Presume it gets easier to ignore with time?...hope so anyway! I started getting mild tinnitus years ago while on methotrexate. It all but stopped when I come off that and went on hydroxy, which I've been on for the last 2+ years, but recently stopped taking due to acid reflux.

You say that you're having problems taking 5mg of tofactinib. Do you find that taking half that makes much difference to your RA when compared with the full 5mg dose? Most people start with 4mg of baricitinib, but I've been prescribed 2mg because I'm prone to infections as you probably know. Early days yet, but so far so good.

wishbone

[Hessie5 in reply to wishbone]

Hi Wishbone - if it’s driving you nuts I would mention it to the consultant. For me it has got easier but I must admit some days it seems to peak but not often. It is always there. Re the Tofacitinib I am supposed to be taking the full whack, but I think my body prefers the slowly slowly approach. Yes, I still have the numb fingers in the morning, the semi tender ankles too, the elbow pain has got a lot better at the moment. Overall pain is there, it’s like waves comes and goes. I have decided not to restrict myself as I use too, life’s too short, and ate a big slab of cake today, I shall probably regret that in the morning when I awake like tin woman, to add to that I have to go into the office! 😬

Now halving my dose works for me but I am sure my Rheumy is going to be disappointed, but I am doing what works for me as they don’t seem to have the absolute answers.

Wishing you well, take it easy and rest assured things shall get better.... Hessie

[wishbone in reply to Hessie5]

I should be seeing my rheumy within the next few weeks so I'll definitely mention it to her. That's if I can last that long as it is pretty bad, so I might have to phone the helpline if things don't improve any by next week. I don't know, I've had a load of problems over the last couple of years and no sooner than things start to look up then another nasty negative comes along and sticks a dirty big spoke in my wheel!

I'll update you after I've seen my rheumy.

Take care

wishbone

[Hessie5 in reply to wishbone]

Totally understand, I would phone them this week to get their advice, this would help you feel better too. Where all in this together Wishbone, here to support. keep me posted. Stay strong and stress-free, Hessie

[wishbone in reply to Hessie5]

I think you're probably right. I have to go out tomorrow but will phone the next day they are open for business, which is on a thursday I think.

Thanks for your advice and support, tis much appreciated.

[wishbone in reply to Hessie5]

Hi Hessie,

Been doing a bit of googling and have discovered possible links between tinnitus and the flu jab. Now it just so happened that I had my flu jab last friday and the tinnitus went crazy on the following sunday. If the flu jab has caused it then I heard that it should calm down within the next few weeks. Of course, there's nothing written in stone regarding all this stuff, just hope the calming down thing holds true.

Bad news regarding my rheumy - I phoned her secretary yesterday who told me that she retired in august and they don't have a replacement as yet. That's really cheesed me off, not only because everything fallen behind but I really liked her as well. I'll still phone the helpline in the morning and ask about my tinnitus, I also need to find out my latest blood results.

Hope you're ok and reading this post hasn't started your tinnitus off again?...damned nuisance that it is!

[Hessie5 in reply to wishbone]

Hi Wishbone - sorry for my delayed response - a manic week coupled with real sore hands painful hands 😬. Interesting re the tinnitus and flu jab, I opt out to be honest - even more so now! How are you feeling now? Hope it has subsided somewhat and you blood tests are fine.

My tinnitus is still there frustratingly - as long as I am on meds, which I was told for the rest of my life it shall be there.

Have a super weekend 😊

[wishbone in reply to Hessie5]

Hi Hessie,

No need to apologise, we all have other things to do and I'm already grateful for your previous responses.

There's little change unfortunately. I am having the occasional spell, usually lasting a few hours, when things quieten down but it's there in varying intensity the majority of time. I phoned the rheumy helpline after but the nurse just read out the known publicised possible side effects. With baricitinib being a new drug I suppose it's possible that there might be a proved linked with tinnitus in time to come. That said, as my flu jab was followed by a sore throat with tinnitus kicking off just two days later, then my money's on that being the probable culprit. I've done a little research and I'm far from the only person who suspects a link between tinnitus and the flu jab, but as per usual with such things nothing is proved. I can but hope it will eventually subside as someone in my research claimed would happen within a few weeks if the flu jab is the cause. I can but hope whoever wrote that is right. If my tinnitus does eventually go then it's no more flu jabs for me. On a brighter note it seems my latest blood tests are ok so I'm good to carry on with baricitinib.

Thanks again Hessie, take care.

edit...there'll be no more flu jabs for me whether my tinnititus clears or not.

[Hobbledehoy]

Hi Kat. This is a bit late, but have only just found your post. I started Baricitinib at the end of March. So far so good! No problems. The odd hot flush. Good luck.

[4seasons]

Having tried many DMARDS' over the last 8 years , all were affecting my white cells resulting in chest infections , My consultant has now suggested Baricitinib , I am interested reading your diary Bernese as I am not keen starting another drug but flare ups are too painful.

[4seasons]

I wish you all the best Kat . Hope something works for you .

We all have different reactions to different drugs ! Good luck

[Hessie5]

Thanks for the understanding. It has got to be the meds and the flu shot that has exasperated this. I am sure it shall settle just need time.

Sounds like your meds are working as good news on your blood results. Mine are still up and down. May I ask, are you able to go online to track your blood markers? I never get told mine unless they are concerned, I just feel it would be good to be able to track!

Thanks again for the update, I was reluctant to have the flu jab and you have made me more wary to avoid with my tinnitus.

Have a good one 😊

[Madmusiclover]

Total life changer for me. Miraculous. From wheelchair to relatively normal. Good luck.