When I started baricitinib, I had some idea that i would be back to normal in a week or two - cooking, gardening, walking around the village doing errands. . . After 6 months of pain and fatigue with Simponi which was not working, I put a lot of hope in this new medication. Previous to the Simponi, I had no meds other than ibuprofen for a month, and previous to that, 3 months on Xeljanz, which I quit when I could no longer stand the side effects. I discintinued longstanding use of methotrexate 11 months ago because it was getting less effective and causing worse side effects. It has been a rough ride, although most of it has been spent on the couch!
So. . . .I am still pretty firmly planted on that couch for the most part. The pain is showing slight improvement, so that is promising. Until today I have been feeling quite discouraged, because in addition to pain and stiffness, I have been feeling weak and exhausted most of the time, and sometimes having bouts of feeling a bit short of breath.
But . . . . after 2 bad days, today I feel better! Some of the joints that troubled me when I started the baricitinib are no linger sore - my jaws, right ankle, right thumb. All my joints feel at least a tiny bit better, including the hands, feet, and right hip. The worst ones (shoulders and left knee, still need a lot of improvement. This morning I was able to lift both my arms to wash my hair in the shower. My energy and alertness seem better today..
I can only hope that I am starting to turn the corner. It's been a hard year, but maybe this medication will be the one that gets me back on track.
Written by
ElizabethW
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Thank you. That's good to hear. I know that I could see improvement for many more weeks. The hope for that and minimal side effects is what I am hanging onto. Glad that you are seeing continued improvement.
Hopefully things are looking up for you now. Good luck on your road to recovery. I really hope baricitinib is 'The one for you' ❤ I'm feeling more positive about the future since starting this medication too x
Good luck. It was a game changer for me. I’m currently in a dip of fatigue and some pain but even when like this the pain is improved on life without Baricitinib. Just watch out for chest infections in first year. Stop drug immediately until they clear. I should say I’ve had none since.
Oh I hope you are turning a corner sounds a little like my experience in the last year and a half. No blinking fun at all. I found when I was on baricitanib that I started to feel a bit of a tingle in my knees which are worse affected in my case after taking them for a few weeks. I knew that they had loads of inflammation to bring under control and I improved pretty quickly and within 6 months my mobility was pretty good. Unfortunately in my case as I have a very low immune system I kept getting infections one after another some more serious than others so had to keep stop starting the Bari and then they stopped working completely. Have to say they’re awesome and work much faster than a lot of the Dmards and no side effects except for the unfortunate infections I kept getting but that’s not down to the baricitanib really.
Not yet being sorted though and fingers crossed it works apart from a couple of prednisone courses and two depo’s I haven’t had any treatment for almost two years it’s been hard to say the least but hope is around the corner.
I’ve been on baricitnib since December and I feel the best drug for me. 3 weeks is early days. I saw a real improvement week 6 and by week 12 felt things were still improving. 6 months down the line and each month even only a little thing improves .
I am so glad for you that you are doing well on this drug. You are right - it is early days for me. I am having good days and bad days and taking it one day at a time.
I have been on Baricitinib for two years and it has been a life saver for me. I can now walk again unaided and drive the car. At the beginning I had a really nasty chest infection and I didn't understand how to deal with it, but since then no more serious chest infections.I have had no flairs since being on it.!!!
I, of course, still feel exhausted a lot of the time and have had various other side effects of RA like cataracts and Sjorgrens syndrome, but I have lost the unbearable pain and I am so thankful for this drug.
I really hope that this works for you. I was despairing before going onto this drug.
Luckily it worked for me and I just hope that it continues to do so.
I am glad that it is helping you and that you can get out and do things.Cataracts? I never heard that RA can cause them. I had su,rgery on both eyes years ago.
Been on baractnib a year and half consultant now going too change it as my bloods are still high so not working ask for your vitamin b levels too be checked too that gives u fatigue and lots of other problems I’ve had three injections last week and three this week then one every three months I’m hoping it will help me hope you get some relief with your medication take care Sandra x
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