Looks like I am going to be moving from infliximab infusions (which are no longer working) to , possibly, baricitinib which is a favorite of my rheumatologist. I have been doing a bit of background reading and I keep coming across people who say they have put on lots of weight on this medication. So, I’m looking for any positive experiences _ is there anyone out there who had no weight problems on baricitinib, just pain relief? I have only tried anti-tnfs so far, none of them lasting long or being very effective, so this would be a new class of medication for me. I know we all react differently to medication, but some side effects seem to be pretty consistent. I would appreciate any help. Thanks in advance.
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Emye343
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No weight issues during my 3+ years on Baricitinib, though I was only taking 2g instead of the usual 4g. Worked well for most of that time but changed to Rinvoq, another JAK, because it was becoming less effective. Rinvoq litle better than Baricitinib so going to ask rheumy if I can go back on Baricitinib as I remained UTI free while taking it and have had two infections during lust seven months on Rinvoq. ....just saying my experince. I'm a male by the way who has a condition making me prone to UTIs.
according to my rheumy it’s becoming his no 1 drug of choice to prescribe. I’ve been on it 3/4 years and I have had no weight issues (to be honest not heard of that as a possibility before) and more importantly I got my life 80-90% back. I even had a couple of months of remission at one point. You can pop Baricitinib into search on here and it will bring up all related posts. I have had chest infections (2 in the first year; none since) and was unlucky to get shingles but worth it for an effective drug.
hi Madmusic lover, were you on the full dose of 4 mg or just 2 mg? Yes, my rheumatologist is the same :. She is very keen to prescribe it. I have had the shingrix vaccine, so hopefully that would protect me from shingles. Thank you very much for your input.
Hi. Look forward to Baricitinib. I had no problems at all on it, it worked within a couple of days and I certainly didn’t put on any weight while I was on it for just under 3 years. It has been without doubt the best drug I’ve been on in 33 years of RA -and believe me, I’ve had just about everything ever invented!
Unfortunately, when I got Covid last February it just stopped being effective. I could have cried but am now on Filgotinib which seems to be doing the job so far. So very best of luck -I’ve posted about Baricitinib before as have many of us and it does seem to be pretty effective though if course we are all unique and what suits one may not suit another.
been on it just over a year and no weight gain but at Xmas had chest infection and again just 2 weeks ago so am off both baricitinib and MTX as just finishing 2nd course of antibiotics... should restart again tomorrow but quite frankly RA seems very settled and still a bit of a ‘glue ear’ hanging around so will probably stay off both for another few days (I’m normally on 4mg baricitinib daily and 20mg of MTX weekly)
thanks Ali. You’ve actually answered my next question by mentioning that you take methotrexate alongside the baricitinib: I was wondering if it is a standalone drug or whether one needs to take a dmard as well. I was very ill on methotrexate but have got used to leflunomide so would be able to take that together with the baricitinib if necessary. Thanks for your information.
I have baricitimab and leflunomide together for a number of years, and it's been great. Like you I couldn't tolerate methotrexate. Don't worry, it should be good. And it does work for the ra, although I do still need painkillers now and then.
Yes, I’m certainly getting a lot of positive replies. I’m starting to hope that she does prescribe it - I’m certainly fed up of all the side effects I’m experiencing from infliximab!
I have been on the drug as an only treatment for almost 3 years. It worked almost immediately. I had been on a TNF for 15 years before that but had to stop due to serious side effects. I have had some weight gain on this medication but it is worth it. I am on 4mgs. Good luck .
Thanks for your reply. Great to know you had almost immediate relief from the baricitinib. Was a gap needed between you finishing the tnf and starting on the jak?
I had a gap of 5 months but this was due to the side effects of the Tnf drug and getting the first prescription as was the start of the pandemic. So everything took a long time. Sorry for late reply.
Hi, i started in baricitinib pretty recently (jan 2023). Its really given me my life back to a large degree. I am remembering parts of myself which I had long forgotten. I have manahed to reorganise my entire house which I had bascially abandoned for the last 3 years. I restarted exercising a little. Talking small walks and bicycle rides for chores. I am starting to loose the weight i put on after getting RA. Not very fast paced but noticeble. The only down side is acne. I now suddenly get acne is unexpectedly (on my face on my back... )
I was nervous and afraid when I started on baricitinib but the helpful and kind people here were supportive and i must say, i am very very glad I for these pills. I am on 4mg.
Thanks for your useful reply. I’m glad you are experiencing such relief with baricitinib. Acne is indeed an odd side effect - better than joint pain though, I’m sure.
Hello Emye343, I was on Methotrexate 20mg for a long time and was switched to Baricitinib 4mg daily 3 years ago, I'm now in remission, pain free and at 70 years old I'm feeling young again. I hope it works for you and good luck for the future.
I’m so glad it has worked for you. Do you know why some people are on 2mg and others on 4mg? I wonder if it is linked to the severity of the ra, or something else entirely.
Hello again Emye343, initially I was taking Baricitinib 4mg along with Methotrexate, but my rheumy said that the Baricitinib was doing " most of the heavy lifting" and he stopped the methotrexate, my hands and wrists are pain free and I can now enjoy my life more.
I’ve been on Baricitinib 4mg since Aug 22 and it’s been really good for me. I was on Tocilizumab for 10 years until July 21 and gained 6 stone in that time but have steadily lost weight since even since starting The Baricitinib. My hands are much more flexible and my ankles are no longer grotesquely swollen. I hope you have good results with it, I’m very happy on it x
I didn’t put on weight with Baricitanib at all it got to work pretty quick. I was only on 2mg daily. Unfortunately I got a recurring chest infection after a year and due to how many courses of antibiotics I needed and being on baricitanib and off it all the time it stopped working for me.
I’m back on low dose mtx 7.5 by injection. I was starting to improve but then got covid and a raised liver function so have had to pause for a number of weeks and then I ran out and had to wait an age to get some more. So I’m back to square one and really struggling and have been for about two months. Started injections again so hopefully in a few weeks will be in a better place. I hope you get on well with Baricitanib I did find it pretty good for about a year until infections crept in but that’s more to do with my immune system than Baricitanib.
Sounds as though you have had great success with baricitinib. Are you on 4mg? Yes, it’s strange how some folks seem to need a dmard as well as the baricitinib whilst others are on it as a stand-alone drug. Perhaps it’s merely a “belt and braces” approach by the individual rheumatologists?
Hi. I was on Etanercept for just over 2 years and it stopped working. I switched to Baracitinib, and it took quite a few weeks to do anything. When it did though, wow! An absolute game changer. Enormous ongoing relief and no weight gain that I've noticed. My hope is for a similar outcome for you.
I’ve been on baricitinib for almost 18 months. No weight issues, in fact it works so well I have been able to get fit. I’m now swimming a mile twice a week and started treadmill walking and running 5-6k three times a week. I’ve lost four stone so far and I’ve never felt better. I have had the odd very mild flare up, nothing like before, just a few sore joints and tiredness. I had tried several other meds prior to being put onto the baricitinib. I was taking leflunomide alongside but have now had that stopped and just using the baricitinib alone.
Thanks for your reply. I’m glad it’s working so well for you and am encouraged that you were able to come off leflunomide after a while. Are you taking 2 or 4 mg of baricitinib?
That’s a shame as it seems to have helped a lot of people, but we are all so individual in our responses to medication. Thanks for your reply. I do hope you have found something that helps you.
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