Baricitinib experiences please. The good, the bad and the ugly (also excellent would be great)

[hellykay]

Hi all, just going through a 2 week wash ready to switch from Enbrel to Baricitinib. The new tablets have arrived and I've managed to freak myself out reading all the side effects. How have people on it found it? The occurrance of thrombosis seems pretty high for instance. Also on a vain level rather than vein, I've just spent the last year losing 2 1/2 stone and when I've done a search on here to look at the drug I see people complaining about weight gain as they are always feeling hungry ( I sometimes wonder if they have snuck pred in to help these drugs work 😁). Infection levels seem about the same as Enbrel? Thanks for any info. I know we're all different and react differently to drugs but would like to hear actual experience rather than drug leaflet.

[Madmusiclover]

I’ve said it before and I’ll say it again I love it. Life changing, No effect on appetite or weight here. It’s also got a short half life and being in tablet form can be stopped and started quickly. I got two chest infections in first year and unfortunately got shingles but that’s it. I still sing its praises. Compared to the 4 DMARDS I tried and Enbrel I feel normal not poisoned: and it works for me.

[hellykay in reply to Madmusiclover]

That's fab to hear. Glad it's been so good for you. Enbrel was my wonder drug @giving me my life back so coming off it, even though it's not working as it should now, is a bit scary in itself.Were you offered a shingles jab before you started? How long has it been working for you? Did you have any of the headaches, dizziness etc as your body got used to it?

[Madmusiclover in reply to hellykay]

no: too young for shingles jab! No side effects at all. It just started working within a few days. I’ve been on it about 4 years I think.

[Deeb1764]

I am the same as Madmusiclover if I knew now when I first started I would have loved to have taken this drug rather than nearly 3 years of hell. When I eventually saw a Professor of RA I told him about to start this drug and he was enthused about this medication as seen so much good.

We can all read the side effects to any drug including paracetamol it has to be written for all drugs. My view is I want damage limitation to my joints etc and you cannot see this till it is too late.

I am not saying all meds are fab as I have now issues from long term use of steroids but we have to go with what we feel is right.

[Amnesiac3637]

Hi. I’ve posted before about Baricitinib and will reiterate that I too loved this drug. No side effects, no weight gain and it worked extremely fast and continued to do so for nearly three years until I got covid and it stopped.

It’s in tablet form so easy to take and cart about. Take it at night as if you’re going to get side effects you’ll sleep through them until your system adapts. All drug companies have to list every side effect that has ever occurred as we’re in the ‘oh please don’t sue me’ culture but most people don’t get any side effects and if they do, they’re transient. Best not to read them at all!

We’re all different though and this one may not suit you. If it doesn’t, come off it and, as it leaves the body really fast, there are no lingering nasties to cope with. Good luck!

[sylvi]

I had to stop it becaause i kept getting infections every month,xxx

[Karen12]

Massive improvement for me with Baricitinib. Only issue I had was skin abscess that seemed to coincide with me starting it. I had a lot last year (12-15) and at first they affected me systemically so had to keep stopping it. I’ve now been able to have it continuously since July/Aug and has my first “normalish” blood tests in over 10 years.

I paid for the Shingrix jab as I’m only in my 40s so not eligible on the NHS. £225 each jab (2) worth it for me as I don’t want to increase my shingles risk. My mum had it over 15 years ago and still remembers now how painful it was.

No weight gain for me either 😀

[skinnycappuccino]

Hello hellykay - I was on Olumiant (baricitinib) from January 2018 to July 2021. It worked very well for me with no side effects whatsoever. Except that I got shingles in 2019 but got antivirals right away and only had a very mild case. I didn't gain weight, on the contrary, it allowed me to keep moving 😊 I switched to another biologic in 2021 because Olumiant stopped working (symptoms came back in my right foot and wrist after 8 years of remission first on Simponi, then on Olumiant). I wish you all the best with it - I've just started Rinvoq (uadacitinib) in February, which is another JAK inhibitor! Christine xx

[Mmrr]

Baricitinib was my first JAK inhibitor. I had reasonable success with it, but had a few viral infections, all minor but annoying, so was changed to Toficitinib. It too worked reasonably well, but lost efficacy after my 3rd Covid vaccination. I'm now on my 3rd JAK, Filgotinib, and it too works reasonably well for me.

By far JAKs have been the best option for me. Easy to take, few side effects.

[Dolindocurmi]

Hi there, l had to stop it because, l kept getting infections also and it just stopped working. I’m in the process of changing this week something that is very low of getting infections, 😊

[LesBev]

Hi, I’ve been on this drug for a couple of years with no side effects. I have put weight on but no idea if the drug is the reason. It works ok, not perfect but so far after 9 years nothing has stopped the pain in my feet.

Good luck!

[Joodee]

Hi, I’ve been on baricitinib for the last 4 years with no side effects at all and a very good level of control over the RA. The fact that it is a tablet not an injection was a bonus as I was previously on humira which stopped working after 12 years. Good luck.

[Doodlereggie]

hi there

I have been on filgotinib for 4days now,which is another JAK same as yours with very very little side effects,and it seems to be working already.I,like you read all the side effects,and can easily think myself into them,but so far so good.just a little spaced out at times which is not at all unpleasant,but as advised by others on here now taking it at night.keep us posted as to how you get on,as this group of meds really seem to work for others posting on here.bit of a miracle drug really!!

[Annieb24]

love it! Best drug so far and I have been trying them for five years. If you have a problem stop taking it. It clears from your system in a very short time.

[Susiemac1321]

I call it my magic pill. It sorted everything out for me literally within days - after nearly two years of misery and trying 4 other drugs without any improvement at all. I wish I’d had it prescribed earlier as it has given me back a quality of life that I didn’t think possible. For the past 3 years I’ve been able to cope with 10+ mile walks, run 5K and play tennis - couldn’t do any of that for the previous 2 years. At one point I told my consultant I felt like I was 80 and I hadn’t even reached 60 at that point

It’s wonderful that it’s a pill a day and no need for injections or repetitive blood tests. I don’t take anything else - I found that methotrexate affected my liver function as well as being ineffective - and have had no issues with it at all. No problem with weight gain (unlike steroids) or infections and have Covid without affecting the efficacy.

As others have pointed out the fact that it leaves your system quickly is another plus. So if it doesn’t work you can move on to try something else. My lowest point was being told that I had to wait a full six months until Rituximab worked its way out before they could try anything else even though it was obvious at the 3 month mark that it had had no effect.

Obviously we all react differently to each drug but I’d definitely recommend trying Baricitinib. If it’s going to work you should find out quickly. I now hardly think about my RA and my consultant considers me in remission. Long may this state of affairs last.

[Hobbledehoy]

Magic for me. Suits me very well, I respond quickly to it. V grateful as hugely expensive the last time I looked. The side effects on all leaflets are hair-raising! Suck it & see.

[hellykay]

Thank you everyone for your input, much appreciated. I'll keep my fingers crossed! 🤞

[Flipper12345yellow]

Hi, baricitinib was the only thing that worked for me after trying lots of other options.Unfortunately, my cholesterol went too high and I was at risk of having another stroke and so I had to come off it.

I haven't been as well since.

Hope it works as well for you.