What happens if you fail Xeljanz : I tried Xeljanz... - NRAS

NRAS

36,542 members45,166 posts

What happens if you fail Xeljanz

ragurl profile image
15 Replies

I tried Xeljanz 4 years ago and did not have good results. My rheumatologist took me off leflunomide and Humira then started me on Xeljanz. I wonder if I would of taken Xeljanz with leflunomide if it would of been more effective? What I really wonder is if Xeljanz did not work is it possible for another Jak med will work? Anyone have any experience with one Jak not working but another one working?

Written by
ragurl profile image
ragurl
To view profiles and participate in discussions please or .
Read more about...
15 Replies
patrickd profile image
patrickd

Hi! I failed with Xeljanz but not immediately. It took about 2 years of taking it and suddenly it stopped being effective and I developed some side effects (BAD headaches). I wanted it to work because I didn't want "needles" and it was just so convenient to take a pill! I noticed if I skipped taking it a day my headache disappeared which obviously is a red flag. My RA MD stopped the medication and we went on to higher pastures (so to speak). We started some injections (I think Cimzia but can not remember) but that didn't work so Actemra and that was my last and successful treatment. Not sure if it's your decision or your MD's but I'd like to think the two of you could work together and decide if you want to try it with something or just something else altogether. Good luck!

ragurl profile image
ragurl in reply to patrickd

Wonderful that Acetemra worked. Do you take anything else?

patrickd profile image
patrickd in reply to ragurl

After Xelijanz failed I went onto Cimzia (I think) and that didn't work so we went to Actemra and I've been on that ever since. Good luck!

LibraryTchr profile image
LibraryTchr in reply to patrickd

My dr moved me from xeljanz to actemra as well. How long until you noticed that Actemra was helping you?

ElizabethW profile image
ElizabethW in reply to patrickd

I am on my 3rd JAK. I started with Xeljanz which worked very well on my inflammation and pain, but gave me intolerable side effects. Then I tried baricitinib for 4 months, with some relief of my RA, but not enough. For the past 6 months I have been on Rinvoq (ubacatinib), and it seems to be working, though the improvement has been very gradual. I have been taking these as monotherapy. Previously I did well on MTX for many years, but began to experience more side effects and more flares.

ragurl profile image
ragurl in reply to ElizabethW

Thank you for sharing your experience. It’s good to hear Rinvoq is working fir you!

patrickd profile image
patrickd in reply to ElizabethW

From what I've heard, it's common for medications to stop working at some point with RA. It's not always the case but sometimes you have to switch after a while. Some RA victims are lucky to stay on a certain medication eternally, others..not so much. I have personally prepared myself for change in the future. Meh..I am just thankful there are many options these days!

Mmrr profile image
Mmrr

I take Xeljanz (toficitinib) with leflunomide, it gives me moderate relief from my symptoms. Previously I was on baricitinib, very similar to toficitinib, but I was getting regular minor viral infections, I don't get these with toficitinib. So worth trying something similar if you had previous success with it in my view.

ragurl profile image
ragurl in reply to Mmrr

Thank you for your experience. I wish you were able to get remission. Moderate recovery is where I am at now but it seems I am declining. I had full recovery for last 15 years so it’s difficult.

Mmrr profile image
Mmrr in reply to ragurl

This is the best I've had in the 6 years since being diagnosed and I still take 12 mgs prednisolone per day too.

oldtimer2 profile image
oldtimer2

My sister was put on two different JAK inhibitors, but no luck. She then went on something else by infusion that I've forgotten but had an allergic reation. She's now on sarilumab injections with great success.

Leics profile image
Leics

I had baricitanib and like Mmrr had quite a few infections. Since then I’ve been almost two years without meds except for the odd steroid injection. I’m now taking tofacitanib another JAK but I have to say even though it’s only been 3 weeks it’s not helping at all my pain has increased if anything I get a few headaches it makes me very tired and very thirsty too so I could say I’m sticking it out for a while to see if it helps after a few more weeks but I doubt I’m going to stay on it as Baricitanib for me was much better started working within a few days and I could feel the inflammation going down. Not this time though. Rock and hard place sometimes isn’t it ?

ragurl profile image
ragurl in reply to Leics

Rock and hard place is right! I keep praying something new and effective is right around the corner. I keep the faith a cure is right around the corner, 🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻

00424291 profile image
00424291

I had been on Xeljanz for 2-3 years, i am also on 15 mg of methotrexate SC weekly. My RA has been stable with this combination.

ragurl profile image
ragurl in reply to 00424291

Wonderful news that your stable!

You may also like...

Xeljanz / Tofacitinib

switched me to Xeljanz I’m supposed to start Saturday & I’m feeling anxious. I was on Leflunomide /...

Anyone suffer dry/burning mouth particularly interested if you take Xeljanz.

seriously considering stopping my Xeljanz in case it's a side effect as it's one I just don't want...

Xeljanz and knee pain

I was on Humira and leflunomide which was working great, but due to mouth ulcers doctor switched me...

What happens if you move to a different area?

discussing moving house. We have lived in the same house for the past 25 years. I have...

XELJANZ TREATMENT REPLACING HUMIRA

Has anyone found that 'Humira' did not work for them? Thought this was a 'wonder' drug..had high...