Tofacitanib causing severe pain ?

[Leics]

Hey everyone. Just a bit of a weird question. Has anyone who has been or is currently taking tofacitanib had problems with SEVERE pain which increased day after day. I’m looking for others who have had a similar problem. I have had to stop taking it because even though I was only on a half dose as I have a very low IGg which I’ve had for a number of years now, I found day after day the pain in my joints became unbearable. I’ve noticed that arthralgia is a side effect so it’s probably that 🤷‍♀️ When I was taking baricitanib another JAK inhibitor after a few days I could visibly see the swelling and inflammation coming down and could feel it too. But I had to stop that because of recurrent infections and lots of courses of antibiotics and then it didn’t work. So silly question maybe has anyone else experienced increased pain which is intolerable and I’m no whimp when taking this drug. I stuck it out for a month but my husband insisted I stop it as it was taking its toll on me and he could see it. Any thoughts appreciated. Hope you’re all doing ok. I’d like to say I am but nope no treatment once again and debility worsening once again. Just a little update. I’ve rang rheumy who passed me to radiology as no treatment until I have an ultrasound scan on my hands. Well the waiting list is 4-5 MONTHS. What do I do now ?

[medway-lady]

I had this with LEF but it only lasted about two weeks then went. Along with all RA symptoms but I'd think you should contact RA team to see what they advise. I hope you get some relief soon.

[Leics in reply to medway-lady]

Thanks for your reply. Unfortunately mine seemed to get worse with each day until I couldn’t bare it. I stuck it out for a month but by this time I was having to whack myself out with painkillers to get through each day. Hubby put his foot down and told me to stop and the pain was better after a couple of days but inflammation was the same. So not for me I don’t think never had this side effect with Baricitanib. So I’m at a loss and thought I’d ask those who know on H/U.

[Amnesiac3637]

None of that sounds right. If you can’t get hold of your rheumatology team at least try to see your GP (I know, hah) to get some idea why your pain levels are increasing so much. It may be nothing to do with your current condition cos we do get other things that come and bite us so get checked out soon as. A month’s too long to wait in severe pain. Good luck!

[Leics in reply to Amnesiac3637]

I do have fibromyalgia but the pain I had was joint pain which increased with tofacitanib. Now I’ve stopped it it’s much easier. I have lots of spells with no meds which isn’t good for anyone and haven’t got my RA under control by any means. I had a telephone consult with rheumy team a month ago and told them of the problems with tofacitanib. They said they were going to refer me for a hand scan (ultrasound) but heard nothing and no follow up appointment either. So I know I have to chase it up again but I’m so tired of having to do this all the time. But know it’s not going to get any better on its own and I should contact them. I’m my own worst enemy I know I should kick myself hard and do it. Thanks for your reply.

[Amnesiac3637 in reply to Leics]

I know how you feel about chasing everything up ourselves and you’re right, it’s so tiring and the feeling of being cared for by the health service can sometimes be a long distant memory when the support’s not there. It’s not easy joining up the dots when you’re in pain and you need help now and not in two, four, six months’ time when the system creaks into action between the various players. Having said that, it’s more important to sort it out ourselves when we really need help and that does sound like your situation so do it without any more hesitation 👍😄.

[Leics in reply to Amnesiac3637]

Yeah you’re right and I know it 🙄. I also know as I wasn’t on any other meds it was definitely the tofacitanib and not just a flare as although I’m still swollen and hurt it’s not as bad as it was. I will kick my ass and do it haha.

[Knit12]

Yes I did, it got so bad that I couldn’t walk and my joints were so inflamed and had to cancel an appointment to get my bloods done. I lowered my dose, but it still didn’t work and I came off it and luckily I had some prednisone for emergencies and tramadol. I contacted my rheumatologist who saw me the next day as an emergency and she could see the state I was in. I had to remain on the prednisone until they could give me the new drug Rinvoq. This was my game changer after 10 drugs. I had previously been on baricitinib but it stopped working after my covid vaccination.

Rinvoq is in the same vein as Tofacitinib and Baricitinib but for some reason is much better for people who have multi problems on the other drugs. My rheumatologist says she is having excellent results with it and is thinking of using it sooner. It only came out about a year ago in my area, and although it has a black box warning has changed my life. My inflammation level is down to 4%. I won’t lie I have had some minor side effects like urine infections but they go when treated quickly and it is nothing I cannot live with.

Maybe worth emailing your rheumatologist and asking if you can get prednisone to help you cope meantime and ask what would be the next drug they can offer you.

Rinvoq is the easy name for it as I can never remember the full name. Hope this helps.

Heather

[Leics in reply to Knit12]

Wow that’s such a great piece of information thanks so much. I thought it was just me and I was being a wimp but I was / am the same. As I mentioned in my post I couldn’t bare it in the end. Don’t know where i’m going next but asked it I could try mtx again as it’s the only thing that has ever worked but liver said no but I know much more about it now so it’s worth a try. Unfortunately I have to wait for a ultrasound scan of my hands and wrists and I found out there’s a 4-5 month waiting list so hopefully they come up with a plan because have no meds atm and struggling.

[EmmaS-NRAS NRAS in reply to Leics]

Hi Leics,As others have said, I hope your Rheumy team can sort something out for you in the meantime as it's really not ok for you to be waiting 4-5 months with no treatment. Just to add to what Knit12 said above, Rinvoq is the brand name for Upadacitinib if that helps. We have some information on Jak Inhibitors (which is the group of medicines they fall into) on our website and in our Medicines booklet. nras.org.uk/resource/jak-in...

Best of luck and let us know how you get on.

EmmaS-NRAS

[Leics in reply to EmmaS-NRAS]

Thanks Emma good to know. I’ve already had baricitanib but it stopped working after lots of infections. I will see what the team come up with I’ve already contacted them and begged for help !! They’re usually very good so 🤞but nothing gets done quickly but I might be surprised for once. Thank you 😊