Hi
Finally the hospital have listened and I’m feeling better although still have the same level of pain. The Toci infusions are finally out of my system and I no longer feel poisoned.. just need to reduce morphine now.
I have been put on Baricitinib now, funding sorted and is being delivered next week.
Please give me some hope if you have been or are on this med as I’m being told this is my last roll of the dice having now failed 7 different drugs.
Thanks, Sarah xxxx
Good luck & hope this works for you 😘
Thank you me too. Had enough now! Hope you’re ok. xxx
Hello Sarah,
I've been on baricitinib for 4-5 months. Noticed a difference in my RA after just 2 days, and that's with only 2mg daily not the 4mg that most people seem to be on, including you I suspect.
I was on hydroxy before baricitnib and continued taking it along with the baricitinib for a month or two. They seemed to be working ok together, not great, but ok, and a noticeable improvement than when I was just taking hydroxy. That's until I decided to stop the hydroxy because of skin and stomach issues. Since then my RA has got a bit worse so I'm seeing my rheumy in January.
It's a new class of med, so hopefully there'll be more of a chance that it will work for you.
Good luck.
Thanks for the reply.
Yes I’ve been prescribed 4mg and also take Azathioprine and so far I have tolerated this which is the only DMARD I can.
Blimey, 2 days is quick I can only hope and pray that this happens!! I really need something to work and with all others failing I’m hoping a JAK inhibitor is the way forward.
Do you think you will change meds in Jan or up your dose to 4mg?
Sarah xx
I think they'll probably want to put me on 4mg. I'm not at all sure about that though as I need to be careful that I'm not opening myself up to an infection. Been there, done that, have two t-shirts to prove it, and really don't want to go there again if I can help it! 
I don't know what to do for the best. If my RA doesn't get any worse then perhaps not push my luck and carry on as I am as that's still an improvement compared to how I was pre-baricitinib, or perhaps try 2mg and 4mg on alternate days, or an even lower dose(?) Suppose another option is a low dose of hydroxy(?) Obviously I need to discuss it with my rheumy in January. Not sure it helps that my rheumy for the last 8 years retired in august and I haven't seen this one before. She's not a permanent replacement either, something my health board seems to be having difficulty with.
Fingers crossed that the aza and baric combination will do the trick for you. One of the good things about baricitinib is it leaves the body in just a couple of days after stopping it. Very useful if someone gets an infection and the main reason my old rheumy put me on it. If you think the baricitinib was quick working, enbrel was even faster...just over a day and I started feeling better.
It’s such a bloody trade off all the time isn’t it!! I know what you mean about infections as Cimzia caused severe infections and I was in hospital a couple of times even though it worked. I guess if it leaves your system that quick it may be worth upping the dose just to see. Strangely enough my Rheumy retires next August so am a little concerned even though he’s not been the most proactive I’ve been under him for 16 years. Enbrel did absolutely nothing for me!!! Isn’t it strange how the effects are so different on us all. Sarah xxx
It is strange that's for sure! I had similar happen with enbrel as you did with Cimzia. I was like new man for the 3 or 4 months I was on it, that's until I ended up in hospital with septic arthritis in my hip...ouch!! The orthopaedic consultant at the time blamed enbrel for allowing a bug from a recent UTI access my bloodstream and told me not to take it again.
You might be right, if I do decide go on more meds, which I probably will as I'm not exactly feeling on top of the world shall we say, then I think I will ask about the alternate 2 & 4mg of baricitinib.
I really liked my rheumy as did the nurses and patients I've spoke to. You never know, but I'll be surprised if they replace her with someone better...providing they can find a replacement that is!
That’s the worry isn’t it. I think I will end up seeing one of the other consultants which will of course will make the waiting between appointments longer. Fingers crossed we will only have follow ups once a year because the Bari is working so well and we don’t need to see them. 🤞
Wishbone, enbrel worked that fast for me too . Nothing else has, sometimes it’ seems like it’s the luck of the draw, and everyone is different. Good luck sj xxx
My OH has had Baricitinib 4mgs added to 20mgs mtx and Salfa. Had it for 3.5 months. Ankle swollen for a year depuffed very quickly and mobility vastly improved. No noticeable side effects. (Some shooting pains in other ankle today, but may or may not be RA related.) No improvement in fatigue but blaming mtx. Overall very pleased he was put on it. I hope it works well for you.
Thank you so much for your positive reply. Yes the Mtx made me exhausted amongst other things.. I’m hoping that this will be the one. Hope your OH’s ankle is ok and it passes. Sarah xx
Hiya Sarah, Great news re Baracitinib! I am on this and have been around 8 months now. ( 4mg ) . It has been a very good drug in dampening down the activity of RA/D. The pain , stiffness and swelling is less and I have had little side effects. Baracitinib doesn't completely take control because if I get stressed, eat Inflammatory foods or overdo things then my joints let me know about it but the severity is much less than it was on Dmards and Benepali. I have Fibro too. The chronic fatigue from both conditions isn't managed with Baracitinib unfortunately and my Rheumy has added in other meds to help with fatigue which isn't successful so far. I think if one has RA (on its own) and if you don't have sleep problems Baracitinib gets the thumbs up! Everything crossed for you. I truly wish you every success with this one Sarah. xxxx
Thank you Suzie, I didn’t realise that you were on it too. I think the stress and diet play a part when in a flare and make things worse for me too. It’s great to know that the drug has helped with the stiffness and pain as this is what I suffer with the most. I am not a great sleeper but I read a lot which helps me doze and rest at least. Thanks for your kind words, they mean a lot. xxx
I think this could very well be good for you! 
Xx
Fingers crossed... I hope you get something for the Fibro and exhaustion but I imagine they are just as difficult to treat. xx
Blimey Sarah, you are having trouble aren't you. This is the drug my rhumy is getting me to go on when i get this TB test sorted out and i have seen the resporatory team before i go on it.xxxxx
Oh Sylvi let’s hope it works for us both. You deserve some relief and peace. 2019 will be our year, it had to be xxx
I’ve been on Baricitinib 4mg for one year tomorrow and I’ve managed to reduce Prednisolone down to 5mg for the first time in 6 years. I was having the worst flare when I started it and it was slow to take effect but I’m so glad I stuck with it. I put a daily diary on here because there was hardly any info on it then. I really hope it works as well for you.
Glad it's still working for you bernese.
Thanks Bernese that gives me some hope and I will look at your diary. What a thoughtful thing to do. xx
Hi. Have read all the replies and this post seems to be the most recent so hoping others will chip in! I too have just started Baricitinib today and am hoping that there will be positive feedback on the forum. I have had 30 years of refractory RA - and every single drug that's ever been prescribed for it! All the recent biologics have mainly worked well to start with but have either poisoned me or become ineffective - the latest, Abatacept, took a long time to work but did eventually but three years on lost its potency so I started flaring again. Have been on Prednisolone 7.5mgs daily forever and lately these are the only drugs which have stopped me folding up into a whimpering heap as I'm unable to tolerate most pain killers. Am really hoping that those of you out there who have been on Baricitinib for any length of time can tell me how it has been for you, what kind of effect it's had on your general well-being and fatigue and pain levels. Am hoping any side-effects will be manageable and transient (or may be there won't be any!). Thanks loads to anyone in advance - will really appreciate your input.
Hi I too started mine on Monday so we can compare symptoms etc if you like. I too have basically had everything going, some with ok effect for small periods but most had horrendous side effects. How are you feeling today? I was fine yesterday but today feel nauseous and headache and exhausted. I’m really hoping it’s not the new meds as you have to go through this cycle of trying to tolerate them. Sarah xxxx
Hallo Sarah
Unfortunately, three days into taking Baricitinib I was knocked over by a severe bout of vomiting which caused my GP and rheumatology nurse to talk to each other but because I also had a banging headache and a fever they thought it was a co-incidental virus (probably Norovirus) so therefore unlikely to be a drug reaction. Rheumatology also said Baricitinib unlikely to cause vomiting, just nausea for the first few days and sometimes a bit of diarrhoea - so that's good depending on your point of view! The R/Nurse told me to leave off the Baricitinib for a week and then start again though she could understand why I may be reluctant in case it was the drug that caused the problem! I'm not giving up on it and as there's a lot of the Winter vomiting bug about I'm pretty sure it was unlucky I caught it just after starting a brand new treatment. When I start again I'll let you know. Hope you're getting along ok now and the nausea and headache have gone. All best wishes.
K X
Thanks for your reply, headaches and slight nausea still there but not enough to stop me eating. 😀 I’m really tired of an evening but I’m starting to feel as though I have a little more energy in the day. I’ve also joined Slimming World as it worked brilliant after I had the children. I need to shed a bit of weight but more for the healthy eating and no drinking. I’ve upped my exercise a little now I’m starting to feel a little better so I think all of these factors contribute. Good luck when restarting it will be good to compare. Sarah xxx
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