Jak inhibitors - help please🙂

[Moomin8]

Afternoon peeps 🙂

Hope this finds you as happy and healthy as can be?

I may have to change my meds...

Does anybody have experience of jak inhibitors?

Thanks in advance.

[Amnesiac3637]

Hi. Have been on Baricitinib 4 mgs daily (Olumiant) for a year now. I’ve had all the drugs ever invented for my severe, refractory RA over 30 years including four biologics prior to this Jak inhibitor. Am on prednisolone 7.5 mgs daily and have been for 30 years whilst taking the other drugs.

Baricitinib has worked well for me and it worked within two days of taking it. I had been off Abatacept for some five months as it stopped working and I was only relying on the steroids which didn’t control my disease well enough.

I felt slightly nauseated for a day or two on starting Baricitinib but switched to taking it at night as it makes no difference when it’s taken - that worked - and have had absolutely no other side effects at all. It’s been very effective in terms of reducing tiredness and swollen joints. Quite helpful for pain though possibly not as good as some of the other biologics. It’s great that it can be discontinued immediately as it’s a tablet and it only remains in the bloodstream for a very short time, unlike the infused and injectable biologics, so if there’s a problem you can stop it with very little problem.

I have found this the ‘kindest’ of the major drugs due to the above, it’s worked very well for me and I would recommend it, though of course we are all different and react to medications in our own unique ways. Good luck!

[Moomin8 in reply to Amnesiac3637]

Hi Amnesiac3637,

So lovely to hear from you 🙂It sounds like you do pretty well with Baricitinib - that's great to hear! Did you know it's being trialled with Covid-19?

[wishbone in reply to Moomin8]

Yes, I did hear about it, but don't know how things are progressing. Back around 18 months ago when I told my respiratory consultant that I was about to start taking baricitinib, he told me there was research underway to see if it can help people with some lung diseases. I haven't heard how that's going either.

Hope it works for you.

[wishbone]

I've been taking baricitinib for over a year, and like Amnesiac, it started working for me within a couple of days. I'm taking 2 rather than 4mg to lower the risk of infections, which I'm prone to. Had frequent headaches in the beginning and was advised by rheumy not to take it for a week, which did the trick. Also a spell of sinusitis about 6 months ago, which was probably baricitinib related. It eased after a few weeks though I still have constant sniffles. Other than that it's worked fine for me.

[Moomin8 in reply to wishbone]

Thank you for taking the time to reply, wishbone. I read that it can cause sinus problems 🤔Pleased to hear it's working for you 🙂xx

[wishbone in reply to Moomin8]

Thanks.

[Stayloose]

My OH has been taking Baricitinib for almost 2 years. His cholesterol went up and was to be retested but was then cancelled due to lockdown . No other issues. It worked it's magic very quickly. Everyone is different but I hope whatever you take next is successful for you.

[Moomin8]

Thank you, Stayloose. My cholesterol was sort of high ish last time it was taken... so I'm wondering if they will give me Baracitanib 🤔

[oldtimer]

If you put the drug names into the search box you will find lots of previous posts with people's experience of these drugs.

[Moomin8]

Thank you oldtimer🙂

[RAexperiences]

I’ve been on 2 mg of olumiant around 1.5 or 2 months. I believe 4 mg has not been approved in Canada due to embolism risks. I’ve been having lots of headaches, was at the doc and my blood pressure was high and I seem to be gaining weight rapidly (super not happy about that). I was hapoy with my weight and now I feel very spongey and inflamed-like water retention or something. I’m having some relief from it but it isn’t life-altering by any means. Was also extremely tired. We’ll see how it all pans out. Best wishes! Luflonomide pretty much put me in remission but I was losing too much hair and terrible runs so it had to go...too bad.

[Moomin8 in reply to RAexperiences]

Morning RAexperiences. Thank you for taking the time to reply to my post. I think Olumiant is called Baracitanib in the UK. I'm sorry to hear that you haven't had an easy ride for you thus far. Our bodies react in different ways to drugs; I wish we could have more of an idea how we will react before we start the treatments. It would seem that headaches feature heavily as a reaction though. I'm trying to get down to a healthy weight just now, so that would annoy me too - if the drug encouraged weight gain. If it was working, it wouldn't be so bad. I was offered leflunomide as an alternative to MTX (25mg), but I'm already on Sulfasalazine and Cimzia, so chose not to. I was put back on a lower dose of MTX (15mg) after a break to increase my neutrofils.

[RAexperiences in reply to Moomin8]

Sorry bout that I’m so used to saying olumiant. Yes it is baricitinib. You are so right, it would be lovely to know in advance how we will react. Gosh you are clearly on your own struggle-ride. I’m so sorry to hear that. I would say with leflunomide I achieved pretty much full remission but the side effects unfortunately meant I had to give it up. I had absolutely crippling fatigue with it at first then that symptom lifted so it taught me that sometimes I have to hang in there as really troublesome side effects can subside. I’m recovering from a drop-foot from a disc hernia tion (whole other story lol) and have little sensation from below the knee to/including the foot. For some odd reason since I started baricitinib that lack of sensation is even more pronounced and my foot is dead as a duck. I also noticed spongey Edema all over but especially in that affected leg/foot all since starting baricitinib. Hope that helps. All best wishes to you!!!

[Moomin8]

Boyoboy! We do go through it don't we? Hope you find you way soon.

[Ladybird25]

Hi Moomin8

I had my first Baricitinib 4mg tablet last night, so I was really pleased to read the comments on here. Thanks for starting the thread. I've been digging my heels in about starting it, as I was worried about the risk of developing raised cholesterol, as I've always watched my cholesterol and have managed to keep it low (my dad died suddenly of a heart attack at 52). Apparently weight gain is an uncommon side effect, according to the list of side effects. I'm on steroids and Methotrexate, and I'm sure they both cause weight gain; I know that steroids do anyway. I've been really struggling with the side effects of the methotrexate, especially the nausea, fatigue, and the MTX "hangover".

When I took my first tablet last night, I noticed a slight "thick head" and I felt a little bit sick, but both feelings soon passed.

I chatted to you recently about the Moomins in Scandinavia, but I've changed my name to something less identifiable...

Take care x

[Moomin8 in reply to Ladybird25]

Hi Ladybird25🙂Lovely to hear from you again! It's such a leap of faith that we take when we start a new journey with alternative meds. I hope that Baracitanib is going to bring you some relief. I will follow your journey and walk a virtual path with you. I managed to come away from prednisolone (steroids) only a couple of months back, but I am still flaring. I'm going to have another blood test this Thursday (my choice) to see if my bloods have improved since 1st June. I'm hoping that if they have, I won't have to change meds. I will certainly have an opinion when I see my rheumatologist on the 7th July - better informed by another blood test. I have learned that I need to take charge of my journey, that's for sure.

[Ladybird25]

Gosh, that's so like me! I have also decided that I need to take charge of my own journey. Good luck with your appointment on the 7th. I'm wondering if it'll be a phone call... The physician associate will be ringing me tomorrow to check how I'm getting on with the Baricitinib. I hope your blood test is OK and that you don't have to change your meds.

Take care x

[Moomin8 in reply to Ladybird25]

Morning Ladybirds25, thanks for your reply 🙂Things have moved on since last week. I went to my dentist with very sensitive teeth - which I thought were my old fillings failing; this turned out to be swelling in my jaw/teeth area due to my RA flare. I also had another blood test 25th June; rather than my crp reducing, it increased again to 126.4 from 92.6 a couple of weeks ago😕My esr remained at 119. This initiated a phone call from my gp who questioned whether my mtx (15mg injection) sulfasalazine and Cimzia were actually working; the next day, I had a call from a nurse in my rheumatology team - what an unpleasant and pushy lady🤬! To cut a long story short, she was calling to avoid my hospital visit 7th July. My inflammation levels are far to high to apply for my Cimzia for another year, but they want to give it more chance to kick in - after having had to stop it for 3 months (mid Dec, Jan, Feb, to mid- March.) So, I'm now on a week of 30mg prednisolone and they've increased my mtx to 20mg 😞. She will call tomorrow to ask the same questions to have a reduced DAS score (false of course) and I have another blood test next Tuesday (esr and crp only as the other bloods would reveal that I have been on pred!) With these new (manipulated) scores, they will apply for Cimzia! Crazy eh? They plan to review my meds in September, at which point they will know what is working and what isn't 🤷‍♀️I just hope that the application for my Cimzia is accepted- otherwise I'm stuffed!

How are you with your new med now? Hope your call is more positive than mine! I'm sure it will be 🙂