Rinvoq

[gnstric66]

I was just taken off methotrexate which I have been on for 28 years along with one or two other medications. I am only on rinvoq now, which does work well, along with methotrexate. I'm just really concerned about not being able to use methotrexate which has always helped me greatly. I wondered if anyone has come off methotrexate and done well with just rinvoq. Thanks

[skinnycappuccino]

Hi there gnstric66, I'm glad to hear Rinvoq's working well for you! I'm not in exactly the same situation - I'm on Rinvoq (since Febuary this year) and also on Hydroxy (Plaquenil) and used to be on Leflunomide as well. When I was put on Rinvoq they told me I could stop Leflunomide and Hydroxy as Rinvoq works very well as a monotherapy but in the end they decided that I should keep Hydroxy because I also have Lupus symptoms. I haven't noticed a difference since stopping Leflunomide, which I guess means Rinvoq does indeed work on its own. I can understand your anxious after 28 years on MTX but from all I've heard Rinvoq should work on its own 🤗 For me it's been a really great med so far 🍀 All the best!! Christine xx

[gnstric66 in reply to skinnycappuccino]

Thank you, best wishes to you

[Bakerannie]

I was put on Rinvoq 6 months ago, together with the methotrexate and hydroxychloroquine I was already taking. Unfortunately I ended up in hospital with a serious bowel infection, and everything was stopped except for pred. After discharge, my Rheumy tried me back on Rinvoq without the MTX due to high liver enzymes, but unfortunately the joint pain started to creep back in. I was restarted on MTX at a half dose, as my Rheumy says MTX may potentate the effects of Rinvoq by 50%. So far, so good, best I've been in two years. Restarting MTX at a small dose may be an option if the Rinvoq on it's own is not sufficient. Best wishes!

[gnstric66 in reply to Bakerannie]

That's great, thank you

[Sheila_G]

That's worrying. Why have you had to stop mxt? I dread being told I can't take mxt again after 21 years. It works really well for me. I hope Rinvoq works well for you.

[gnstric66 in reply to Sheila_G]

Thank you I guess my dr thinks my immune system is too suppressed with both meds. Mtx has worked well for me too.

[gaynorwhalley]

I've been on only Rinvoq for about 18 months as methotrexate upset me. Thankfully with exception of the odd ache or so, it has been a complete life changer for me.

[gnstric66 in reply to gaynorwhalley]

That's great! Thanks

[Leics]

I have been taken off mtx too but I was only on it for about a year until I got covid and it didn’t work anymore and the side effects became intolerable. I’ve been waiting for 3 months to start rinvoq (still waiting 🙄). I’m hoping it’s going to be a game changer for me as I’ve been without treatment for about 4 months and it’s awful pain off the scale and debility increasing daily. Although I can’t specifically answer your question I wanted you to know you’re not alone contemplating rinvoq as a mono therapy. Previously I had a half dose of Baricitanib as a mono and it was pretty good. I wish you lots of luck 🤞

[gnstric66 in reply to Leics]

Thank you so much, I hope rinvoq will work great for you

[Leics in reply to gnstric66]

Thank you when I eventually get it 🙄. Keep us posted how you’re getting on with it. In my experience the wait to get it takes forever, I’ve had the bloods done and chest X-ray etc but still waiting. That was over six weeks ago. Hope your team are quicker than mine.

[Hisue]

Been using Rinvoq mono therapy for 2 years- it’s the only RA med that has worked well for me.

[gnstric66 in reply to Hisue]

That's great, thank you

[Blodynhaul]

Hi gnstic66, sorry to to hear of your concerns. I just had to check what Rinvoq is - it's a JAK inhibitor. My situation is that I was on methotrexate (MTX) on its own for about 14 years and did very well on it mainly (a few blips), but in the end it got too toxic for my body and liver issues and nausea got too much, so that was swapped for Leflunamide on its own - and I did very well on that till start of 2021 when it sadly stopped working. The rheumy got me on the biologic Adalimumab but it didn't work at all. I was terribly bad throughout 2021 with the RA completely out of control. But thank goodness, rather a last resort, was put on Filgotinib, a JAK like yours in December 2021 - and it's been a miracle in terms of controlling my RA - on its own. I've not had to take MTX or anything else with it (though I have some bad side effects from it & still have RA damage, but at least it's controlling the active disease, pain & inflammation).

So, in my experience, I've never taken more than one med at a time - and apart from 2021 when things stopped working - the JAK on its own is doing its job in terms of my RA - so that is definitely possible without MTX at the same time!

WIshing you good luck!