Hi ,
Anyone on Baricitinib? I started last month the Baricitinib, this is the 6th biological I’m on . No results yet, I’m having a really bad episode of flare up, and generally feeling really unwell.
Does anyone has this problems while on Baricitinib?
there have been quite a few recent posts about baricitinib. If you put the name into the search box, you will find previous answers.
Just about to start it.
Hi, I’m in week 6 (it’s my third biologic). I haven’t seen any improvement either and am back on steroids. It’s very disappointing as it’s such a convenient drug. On the upside I haven’t had any side effects yet (touch wood)! It does say it can take up to 12 weeks to work so I’m ever hopeful.
Good morning Ruby2002, how are you doing on Baricitinib now ?
I'm only 3 days in , but they have been quite a miserable 3 days, the absolute exhaustion has taken me by surprise, as has the indigestion, epigastric pain, wind and generally feeling unwell. My joints have been aching like mad since 12 hours after starting Baricitinib, much worse than without it. Due to all of the above my mobility has dropped off too.
Hi Mmrr
Well I’m on week nine now and saw my Rheumatologist three weeks ago. We’ve decided to persevere for a few more weeks and I’m combining with 2.5mg of Prednisolone. I’ve just had a blood test but no results yet so it will be interesting to see if anything has changed - luckily(!) I respond well to steroids and I’ve onky had one flare in three weeks but I don’t know if that’s down to the steroids or Baricitinib beginning to work.
It’s funny you should mention exhaustion as I have hardly any energy at all and haven’t for several weeks. I can get 12 hours sleep and feel like I’ve been up all night! I was wondering if my iron was low but now I wonder if it could be the Baricitinib.
I was lucky that I had very little nausea right after starting and I believe this is common for two weeks when beginning Baricitinib. I take Lansoprazole which I get on prescription for a hiatus hernia but I believe there is a version which can be bought from the chemist and it works very well.
How are you feeling now?
Thanks for the update Ruby2002. I really don't think Baricitinib is doing it for me.
I'm burning hot, my wrists and ankles have ballooned and I'm so fatigued. I've upped my own prednisilone , with a wee bit relief. I'm having 2 root canals taken out next week, so trying to keep the prednisolone as low as I can. I'll review my situation after the extractions and maybe call rheumatology then.
I'm seeing my GP tomorrow for something unconnected with RD, but might just show him my ankles in the passing (oooohhhh la la!)
Oh Mmrr I’m sorry to hear that. It’s such an easy drug to take, much better than injections and infusions that I’m still hopeful it will work. My Rheumy (who is amazing) said that there are lots of other biologics (this is my fourth although previously I had approx ten very successful years with Remicade) so there is hope for us.
Could you ask your GP for a steroid injection tomorrow? It might be enough to get you through in the hope Baricitinib works the miracle it claims it can do!
Hope all goes well tomorrow.
Btw is the root canal removal due to the possible connection between that and RA.? I read it on this forum recently and I have two old root canals, one of which was done not long before my RA started so now I’m thinking that perhaps I need a word with the dentist ...
I fell a few months before becoming unwell, broke 8 teeth and lacerated my mouth. I had 3 courses of antibiotics in quick succession. That was 4 years ago. Several root canal repairs later, and things are no better. The teeth are not right, so out they are coming. I have a teeny weeny hope things might improve, but I'm realistic.
Ow! I’ve had RA since 1990 ish, I was 23 when diagnosed. I had had a nasty fall not long before becoming ill and my mum read an article which said a fall can trigger things. Coincidentally she went on to develop RA after me and after a fall where she broke her ankle. I’ve heard it can lay dormant just waiting for something like a fall or a virus to wake it up - we just need someone to work out how to put it back to sleep!
Indeed. I have a friend, ex walking group partner who had a nasty fall and several months later developed RA. Her rheumatologist speaks of a catastrophic event often being the trigger for susceptible people. My friend knew she had positive rheumatoid factor, but experienced no joint or other issues until the fall.
Hi Mmrr hope you are well. I just wondered did the Baricitinib ever work for you?
It never did kick in with me and I’m now taking Leflunomide and 5mg Prednisolone as well as the Baricitinib. I’m about to stop and I’m switching to Rituximab!
I've had a very mixed experience on baricitinib, start/stop 4mgs down to 2 , back up to 4 , then alternating days 2/4 mgs.
But I got hand, foot and mouth disease last week probably due to being immunocompromised by baricitinib. So I'm off it again.
My preference is to ditch it, but rheumatology want me to try it again. So in a bit of a dialogue just now. I have a rheumatology appointment in January, so I can see me capituating fornow !!!!
But that said I did have a few good weeks on it where I felt reasonably well.
I hope your next meds go well.
Wow, you are having a really rough time. My consultant actually called me yesterday afternoon, I’d emailed her an update and said how I was feeling quite good since starting Leflunomide and the increased Prednisolone. We had a chat and have decided to stay on the Baricitinib for three months and see if I can reduce the Prednisolone. Apparently with the funding if I switch to Rituximab and it doesn’t work I can’t switch back! Are you taking anything with the Baricitinib, I know it’s recommended to use MTX but I can’t tolerate this drug neither tablets or injections. I wonder if it’s worth you giving Leflunomide a go?
Six!
Wow I thought I was odd man out waiting to find the ONE!
Been combating an endless flare for 7 months!
Just started my 4th biological (IV Infusion Acterma)
Was on Enbrel, Humira & Xelzanze. Nothing has worked so far.
Dr says be patient! So sick of being patient. I just want this flare to END!
I was taking Baricitinib for a while and they done nothing for me so the nurse stopped them iv tried a lot of medication so far and no joy now I’m on new meds again and waiting for a complete new knee this month?
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