Desperate for feedback

[Roostermum]

I started Olumiant 2 days ago and the side effect of nausea is AWFUL. Question: for those of you who have taken it for awhile, does the nausea get better with time? I’m desperate for just a glimmer of light at the end of the tunnel as this level of nausea is causing me to stand (lie) still as life passes by. 😞

[Mmrr]

I have not been on olumiant, but have been on 4 DMARDs and a biologic, most have caused nausea, all settled within a few weeks of taking them.

[ponylover]

Hi I have been taking Olumiant for nearly 3 months and have had no nausea, I take it just before bed with a large glass of water. This has been the most effective drug I have had in 15 years, hopefully it will work for you too.

[Roostermum in reply to ponylover]

Thanks so much for your reply- I will persevere! 🤢

[Bx12]

Hi, I also now take it, together with Leflunomide, I have not had any side effects at all, so I hope that yours do not continue. It has been the first time in many years that I feel as if my arthritis is under control.

[Roostermum in reply to Bx12]

So so happy for you, enjoy every day. I too am hoping this nausea nightmare will subside in a couple of weeks.

[Recorder500L]

I too have been taking Olumiant - Baritisinib since last September. Just sometimes, not everyday I feel sick in my stomach; it doesn't come to anything. Keep going and I hope it will work out for you. As other people have also quoted, it is the best drug that I have taken in 30 years of suffering.

[Roostermum in reply to Recorder500L]

That’s super, very encouraging to hear and I’m so glad it’s bringing relief to you. Fab! ☀️☀️☀️

[Leics]

I’m taking Olumiant too only on 2mg. I haven’t suffered with nausea but I take mine an hour or so before bedtime with a large glass of water and make sure I’m sitting upright until bed. The reason I decided to take it late at night is so any side effects I should sleep through. I do feel for you though nausea is just the worst I had similar side effects with mtx and I felt so awful for months my liver said no with that so I was taken off it sharpish but nausea was with tablets and then with injections. I wouldn’t wait for weeks and weeks until you can’t bare it I would ask for rheumy advice to see if there is something that could help you with it.

[Roostermum in reply to Leics]

Yes nausea is rotten. I’m sorry you were struggling like that, so disheartening. I actually take mine at 6 pm exactly for the reason you describe. Will be talking to rheumy-nurse later this morning. Thanks so much for getting back to me. 😊

[BonnieT]

I told mine I was having stomach PAIN. She prescribed Zofran for nausea. Zofran might help you. Now I’m having bowel problems.

[Roostermum in reply to BonnieT]

Thanks so much. I will keep Zofran in mind. I’ll be talking to my rheumy-nurse later today. ☀️

[Amnesiac3637]

Hi. I started on Olumiant (Baricitinib) 4mgs three weeks ago. Prior to this I'd been through most of the biologics - the last one , Abatacept, which was stopped in November last year as it was no longer effective - all worked very well until they didn't! I had a break from everything apart from 10mgs of prednisolone daily from November until starting the Olumiant. Within two days I felt better in myself, the great lumpy swelling on the joints of my right hand, which resembled one of the slopes on a bmx track (!) reduced significantly and is now gone totally, my fingers on both hands are totally pain free as are now all my joints and I've stopped swallowing bucket loads of paracetamol and ibuprofen. Have managed to reduce prednisolone by 1mg so far. Any slight nausea and brain fog which I had initially was negated by taking the drug after supper so any effects are slept through by the time they kick in. As it doesn't matter when you take it that works for this. I can walk again with no pain and do my housework and large garden without the awful fatigue I've been having. It's said this drug doesn't work straight away but I'm here to prove that sometimes it does. It may be that in future, and I appreciate it's early days, I may have problems with blood results or other nasties but at the moment, after 30 years of serious problems with RA, I'm doing brilliantly and I really hope that if you're just starting on it or contemplating taking it it works for you as well as it is for me. Good luck and don't give up too soon!

[Roostermum in reply to Amnesiac3637]

Wonderful news! Wow, to get your life back to that degree. Unfortunately I’ve had to come off Baricitinib after three weeks as the nausea was very severe 24/7 despite anti-emetics. Totally not sustainable. Oh well, let’s try another...

[MrsAouda in reply to Roostermum]

I’m sorry to hear you’ve been taken off the Baricitinib. It’s such a rollercoaster of emotions each time a new drug is prescribed and then turns out not to be the magic potion we’re all looking for. I hope you are prescribed something that works well for you soon xxx

[Amnesiac3637]

So sorry to hear that you've not been able to continue. We all put such faith and expectations into these new drugs especially if we've had disasters with previous offerings! It's all such a lottery as to how your body copes with very potent medications, particularly when they're very new and untried over many years. Do hope you have success with whatever else you're given. All very best wishes for a pain-free future.