Baricitinib - what a life changer!

[jaye-london]

Hi all,

I don't post much, but do read posts here very regularly. Just thought I'd give an update.

Having been tried on many other drugs which did nothing for me, I started Baricitinib in late May and WOW! I think I have finally found my Holy Grail of drugs! I could feel a tiny improvement within the first week... just slight difference to the amount of pain in my feet first thing in the morning, but nonetheless perceptible. Three months in, what a difference! Pain and stiffness is virtually gone.... and I haven't had the debilitating RA fatigue either. I'm actually beginning to feel like I really am returning to normal and can think about getting back to doing physical things (eg gardening) for pleasure, rather than saving up my energy just to get through essentials such as housework.

It's taken 4 long years to get to this point, but I'm finally making it out of the tunnel. My next challenge is to wean myself off the steroids and hope my adrenals wake up. I'm down to 6mg now and know I need to reduce very slowly. Fingers crossed!

J

[sylvi]

WOW I started that drug this last Saturday so i am hoping it helps me as much as it has you.xxx

[Lolabridge]

So pleased for you. Hoping Truxima will do the same for me .... so far so good. Good luck with the steroid taper programme.

[beeckey]

It is great to hear when someone has such good results long may it last B

[Gigi71]

Excellent news, I had the same with Humira, 11 years ago. I regret not coming off steroids, only a low dose of 5mg, with OP and spine problems now, not to mention thin skin and a few more add on’s. Good luck with your taper. X

[Hidden]

Same here jaye! Been looking for my holy grail a long time and i think 🤞this ( Baracitinb) could be it! It has reduced a lot if inflammation and i feel my normal self coming through. I can now do a few "normal" things that were not possible before. Keep well and long may it last! 🤗X

[Ms48]

So glad you have turned a corner and feeling better.

You say you are also still on steroids.

Do you think it’s the new meds or the steroids.

I really want to change my meds

Orencia every 4 week infusion and

Duexis everyday I get confused as to which is really helping me.

I know the Duexis (800 mg ibuprofen coated ) can’t be good for a prolonged use but without it I feel ill... 🤷🏽‍♀️

I get an infusion next week I will definitely have to mention this and hopefully get some answers..

Stay positive people🙏🏾

[tamnwill]

Hi Jaye, thrilled you’re having success with baricitinib, are you still? I’ve been offered it as I’ve been on tocilizumab for 8 years and it’s abilities to ease chronic pain and tiredness has reduced so they have offered me baricitinib, but I’m tentative. Any advice would be appreciated.

[jaye-london in reply to tamnwill]

Hi Tamnwill,

I'm still on baricitinib but have only managed to reduce steroids down to 3mg... and, in fact, I'm not pain/stiffness free at the moment. I'm desperate to get off the steroids altogether, so am putting up with the pains. I think baricitinib has helped but it's lost much of its efficacy for me and the steroids have masked this somewhat.

Last time I saw my rheumatologist I asked if it was worth trying one of the other JAK inhibitors, but he told me that there was little point as they work the same way and that, unfortunately, I'm just one of those people that the drugs don't work well on. I need to research this some more, as it doesn't make much sense for there to be multiple types of JAKs.

The positive is that even though I am far from pain free, I am also nowhere near as bad as I was. My lowest point a couple of years ago was when I had to do a 10 minute walk to the Post Office and could barely get home... was shuffling along the street at snail's pace... looking at sitting on the kerb for a rest, but didn't as I knew I'd never have got back up again!

So overall, I'm glad to be on baricitinib, but I'm resigned to probably never being pain free again. Counting my blessings that I can still do what I can and try not to think too much about those things that are beyond me.

[tamnwill in reply to jaye-london]

I get that totally. Ive had to have 4 steroid injections into my shoulders and wrist in the last 12 months so as we have covid19 at foot now she wants me to have something I can administer at home negating the need to go into hospital for my infusions. I have till tomorrow to decide if I change to the tablets or self administer the toci, but I don't know if this would have to be weekly or monthly.