Olumiant

[Darwin]

Hi is anybody on Olumiant and how are you doing with it

[keeta]

Hi lovely i.ve been on it for a good few months now.and its really good .most of my swellings have gone down .still some pain .but compared to what i had .its great

Very tired but can.t complain.

Hope it helps you love.kathyxx

[wishbone]

I've been on 2mg instead of the recommended 4mg for about 6 weeks, including a week's break because of headaches. Like Kathy, most of my swellings have gone down. I'm also still in pain but less than I was before. I'm moving a lot easier too. Not a huge improvement, but I'm grateful for the difference its made, especially the absence of the terrible pain that used to envelope my shoulders, arms and hands every morning when I got up.

[Shalf]

Hi Darwin, I've been taking 4 mg daily past few months now. First few weeks were terrific but then I had a terrible flare. It's been kinder than other meds but my health with my RA symptoms have been bit up and down. Seeing Rheumy soon and will review things. I also have Fibromyalgia. Some similar symptoms so remaining open minded re Olumiant for now.

S x

[Felldweller]

Hi Darwin, I was started on Olumiant a couple of months ago and my super-lovely rheumy nurse tweaked around with the dosage, to get it right for me, and am on 2mg, every other day, and it really helps. I have had no horrible side effects, I feel better in myself, my aches and pains have diminished significantly and I would say to you to jump right in and go for it! These new biologics are wonderful.

[wishbone in reply to Felldweller]

Hiya Fd, glad the Olumiant is working for you.

I'm on 2mg rather than the usual 4 because I'm prone to infections. Do you mind if I ask why you are on an even lower dose?

I also have a super-lovely rheumy. Unfortunately she's retiring within the next month or so. Can only pray that she's not replaced by that awful arrogant male locum who took over for a while a few of years back.

[Felldweller in reply to wishbone]

Hi again wishbone, firstly re: arrogant male locum who might replace your current lovely rheumy nurse. I have had dealings with this type and decided that he was only treating me like something he'd trodden in because I was allowing him to. I asked him to modify his manner when addressing me....result. Take no prisoners. Anyway, back to the olumiant. I have tinnitus, as a result of hydroxychloroquine I was taking last year, which has been a nightmare to deal with since then. Trial and error has lead to me taking 2mg every other day as it is keeping a lid on joint problems whilst not upsetting the tinnitus. I have seronegative RA, and am learning to cope with and live with the various spots of trouble I have...shoulders, wrists, hands, feet. The very best thing I have done, no meds involved, was to quit all sugary stuff like cakes, chocolates, sweets, etc. I seriously cut out most sugar from my diet a couple of months ago, when I wasn't taking any meds for any longer than a few days at a time because of the tinnitus reaction. Sugar is horribly inflammatory, so why do we chuck the stuff down our necks when we are also desperately trying to reduce the inflammation we have? My last bloods showed a massive decrease in the inflammatory markers, due mostly, at the time, to quitting sugar. But do give the olumiant a go, it's the business! Take care.

[wishbone in reply to Felldweller]

I'm a big bad boy and won't be taking any prisoners that's for sure. Seriously though, since joining this forum I've learned a lot and am more confident when talking to doctors etc, so if someone has an attitude problem then I'll let them know about it.

Well done cutting right back on sugar, I doubt that was easy. I don't eat much sweet stuff, though probably still too much. After giving up smoking, drinking, recreational drugs and going on all night raves, I think trying to give up my Cadburys Creme Eggs as well is asking a bit too much.

Good that such a low dose of Olumiant is working for you. Getting an infection is my big concern as I'm prone to them. At least if I should get an infection now, I can talk to my rheumy about going on a lower dose like you, after it clears of course, instead of stopping it for good.

Thanks Fd, and hope things continue to improve for you.

[bernese1225]

Hi Darwin, I’ve been on Olumiant (I call it Baricitinib) since December. I did a daily diary for the first few months and posted it on here, you can read it on my page. I know we all react to meds differently but I thought it might help people starting on it as there isn’t much information about. It worked slowly for me at first but I was having one of the worst flares ups when I started it. Eight months in and I feel the best I’ve felt since I was diagnosed with RA in 2013. I’m on 4mg daily and have no swelling or side effects. I really hope it works as well for you 😊

[wishbone in reply to bernese1225]

Good to hear it's still working for you bernese.

Do you take any other meds as backup?

[bernese1225 in reply to wishbone]

Hi wishbone, I’m only on Prednisolone and Baricitinib for RA. Baricitinib is working that well I’ve managed to reduce pred down to 6mg. I’ve been on it now for 5 years without a break so I’m over the moon 😊

[wishbone in reply to bernese1225]

Fabalistic news.

[Darwin in reply to wishbone]

I am on 5mgs and going to try get off it. I’ve been on it for two years x

[bernese1225 in reply to Darwin]

I’m desperate to get off pred too. I’ve put 4 stone on (cushingoid) and It’s also caused my my skin to thin. My GP says I look like a lemon on sticks 😂 good job I have a sense of humour. She reckons it’ll take approx 6 months to get from 5mg to zero. Fingers crossed

[Darwin in reply to bernese1225]

I feel your pain. But one of the side effects of baricitinib is weight gain to I’m wondering if this is preventing me losing weight x

[bernese1225 in reply to Darwin]

I’ve managed to lose a stone but can’t seem to shift anymore. GP reckons it’ll be easier once off pred. It’s so frustrating isn’t it

[Darwin in reply to bernese1225]

It sure is x

[Darwin in reply to bernese1225]

I was on for six weeks then had to stop because of an infection. Back on it now and yes my swelling has gone down and soreness lots better. Hope it carries on. Only thing with me is I’m trying to lose weight and it’s not moving at all.

[wishbone in reply to Darwin]

Hi Darwin, how long did you stop taking it for?

[Darwin in reply to wishbone]

Two weeks x

[Darwin]

Thanks for all your answers. Seems like it’s working well for everyone xx

[Leics]

Oh so good to hear others are on olumiant 👍 and seem to be ok and doing reasonably well. Hooray 😁 I’ve just been offered this (after 5 years of NO treatment) I’ve got to say I’ve found it hard to get information as it’s very new. A lifeline and some hope at long last. Yippee. So glad I read this post, wasn’t meaning to hijack it. I’m definitely going to give it a go they’ll be no stopping me fingers crossed to coin a phrase.