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Treatment

New drug? Has anyone experienced Tofacitinib/Xeljanz?

  • By miaj

    Hi all, I’m new here having started treatment for RA in the last 6 months (man, it feels good to finally have a diagnosis and start DOING something! :).

    I was started on Methotrexate and Plaquenil, but still have pain and inflammation if I drop my Prednisolone below 7.5mg/day, so the Rheumatologist has suggested Tofacitinib/Xeljanz. She says this is a JAX inhibitor, so it works differently to the other biologics (like Humira). It’s also in tablet form, rather than injectable.

    From what I’ve read, trial results show around 20% improvement over the more well known drugs, but it’s only new, so there’s no long term data available.

    So — I would love to hear from anyone who is taking it, especially if you’ve ever taken one of the other biologics and so have something to compare it to. Does it work better? Are there any more/less side effects. Anything else you notice?

    thanks heaps — mia

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  • By Lauren Tucker Keymaster

    Hi Mia,

    Thanks so much for posting in our Forums. We hear you when it comes to getting the correct diagnosis. While you may hear back on personal experiences from our community members, I thought these articles would be helpful.
    Here is one article “Xeljanz Side Effects & Safety” https://rheumatoidarthritis.net/treatment/xeljanz-side-effects-and-safety-review/

    Additionally, I thought this personal article by one of our contributors might be helpful as well “Xeljanz: New Med, New Life?”https://rheumatoidarthritis.net/living/new-med-new-life/

    Lastly, here is an article on the different biologics: https://rheumatoidarthritis.net/treatment/biologics-treatment-options-for-ra/

    Please come back anytime.
    Thank you for being part of our community.
    Best of luck,
    ~Lauren (Community Manager Rheumatoidarthritis.net)

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  • By miaj

    Hi Lauren and thanks for the welcome. It puzzles me why, of all medical conditions, RA seems to throw so many health professionals. Despite the difficulties, there ARE classic signs and symptoms that so often seem to be overlooked leading to confusion and much angst. Anyway, thanks again for the welcome and also the links. All information is good information at this point! Mia xx

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  • By Mariah Z. Leach Moderator

    Hi Mia ~

    In addition to the information that Lauren has provided to you, I just wanted to remind you that everyone’s experience with RA is unique – which means that everyone’s reaction to each biologic medication will be different. Some medications work for some people, some don’t. It can sometimes be a bit of a frustrating process to find the right biologic medication for your personal case, but I can tell you from personal experience that if you are able to find one that works it can make a huge difference in your quality of life! And, as you mention, Xeljanz does have the added benefit of being the only biologic that doesn’t require you to take it via injection or infusion.

    Best of luck to you!

    ~Mariah~ (Site Moderator)

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  • By DaveW

    Hi… I have had RA for about 40 years and actually went into remission for several years and then it returned with a vengeance. I went through the usual route with Plaquinil, Methotrexate, Prednisone (wonder drug), Celebrex, and Enbril. Unfortunately I also had diverticulitis and had an attack and nearly died. I was in the hospital for 44 days and had a chunk of my colon removed. Needless to say, I became pretty gun shy of biologics.. I also had 3 more surgeries after that, all related, and when I was somewhat back to normal, I started seeing a new Rheumatologist. Fortunately, he was a Dr that I could really talk to and he seemed very eager to help me. After a complete exam and consultation, he strongly suggested Xeljanz. Even luckier, he was personal friends with my surgeon and they both discussed the option and agreed that I should try it. I had to wait a bit until my last surgery healed before I could go on it and when I did, I had rather nice results. 2 weeks in, I was feeling probably 50% better and a gradual increase after that. As luck would have it, I had to have yet another surgery, so I had to go off of it for 6 weeks before the operation and could not return to it for 6 weeks after. I am now in my 2nd week and am not getting the results as quickly, but I feel that it is coming. Nice to find this site and share the ups and downs of this disease.

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    • By miaj

      Thanks for sharing your experience, Dave. Totally agree with you about how much it helps to have a Dr you can talk to. It makes the biggest difference. It’s been a while since I first posted and I think I’m on the verge of swapping from Xeljanz to Simponi. Xeljanz had been fabulous for my fatigue, mood and energy but isn’t doing a lot for the joint and tendon inflammation that I get. Fingers crossed the new one deals with both! (sore toes as well :).

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    • By DaveW

      Hi Mia.. I had not head of Simponi… Your comment about energy levels with Xeljanz explains my increase in energy. I was attributing to a diet change, but that certainly could be what is causing it. That part I like! Please keep us posted on your progress with Simponi. Sounds interesting.

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    • By miaj

      I will, would like to hear how you go, too — it’s hard to know which of the combination is having the ‘good’ effect, isn’t it. I wish they came with flashing lights or something! 🙂 It was about 3 months in with taking the Xeljanz that I suddenly realised I was starting to have proper restful sleep and that the horrible fatigue moments (I liken them to a seagull flying into a window) had all but disappeared. The change was pretty gradual and then suddenly I realised I was feeling almost normal. It was a great moment! 🙂 Does make me a little nervous to change to something else, but as my rheumatologist said — you can always go back if the next one you try doesn’t work as well.

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    • By DaveW

      I certainly will, Mia. So far, pretty much the same results as you. Not so hot with the inflammation, but it is early yet. It sometimes take a few months to work effectively. Last night the weather was bad and I couldn’t sleep for the pain in my shoulder and right foot. This winter here in Michigan has not been great for arthritics. I don’t blame you about the nervousness of switching. Hang in there!

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  • By Erin Rush Moderator

    Hi DaveW and thank you so much for sharing a part of your story with the RheumatoidArthritis.net community! I am glad you survived your episode with diverticulitis! I am so sorry you have had surgeries affect your medication regimen. I know that must be incredibly frustrating. I really hope you start seeing results from the medication very, very soon! You may also check out our Facebook page, if you would like — https://www.facebook.com/RheumatoidArthritisDotNet/. Thanks again for taking the time to comment here! We’re glad you found us! Please let us know if you have any questions. While we can’t offer medical advice or diagnosis, we are happy to help in any way we can! Best, Erin, RheumatoidArthritis.net Team Member.

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    • By DaveW

      Glad to be here Erin and thanks for the welcome. One thing that I have learned is that all (or most) Drs mean well, and try their best, but nothing beats the experience of conversing with folks in the same boat. I always feel better when I know that the person I am speaking with knows exactly what the issues are. 🙂

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  • By Mariah Z. Leach Moderator

    Hi DaveW ~

    I will agree that it is so nice to talk to others who understand what you are going through – it certainly helps me feel less alone! Thanks for sharing your perspective!

    ~Mariah~ (Site Moderator)

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  • By Richard Faust Moderator

    Thanks for writing Whit. I cannot personally speak about Xeljanz, however, we do have several articles about it. These first two from our editorial team look at how it works and side-effects and safety respectively:

    Xeljanz (tofacitinib)

    https://rheumatoidarthritis.net/treatment/xeljanz-side-effects-and-safety-review/.

    This article from one of our contributors looks at her experience with Xeljanz: https://rheumatoidarthritis.net/living/new-med-new-life/.

    You may also want to check out our Facebook page at https://www.facebook.com/RheumatoidArthritisDotNet/ and see if the community has some thoughts for you.

    Keep us posted on how you are doing. Glad to have you in the community. Best, Richard (RheumatoidArthritis.net Team)

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  • By kiki

    I was on Xeljanz a couple of years ago. Within four days my husband, who is a physician, was calling it “the miracle drug.” While on Xeljanz I was able to walk and train and complete three half marathons within about 8 months. I had not felt so good in a long, long time. However, after being on it for a year and a half it completely stopped working. My RA Vectra number went sky high. Therefore, I had to go onto Actemra. I encourage you to try Xeljanz as it is the best drug I’ve had as far as less pain, and able to do more activity. Good luck!

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  • By gduffy6

    Hi, I am going to be talking to my doctor next week about trying Xeljanz. I have tried Embrel with no luck. I have been on sulfazine for 7 years and that just tries to keep the RA from advancing.

    Just wanted to say hey and start to be part of a group.

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  • By Erin Rush Moderator

    Good luck with trying Xeljanz, gduffy6! I hope it works well for you, should your doctor be open to you trying it. Thanks for sharing and welcome to the community! Best, Erin, RheumatoidArthritis.net Team Member.

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  • By DaveW

    Hey everyone.. I posted in January (see above), and was just going back on Xeljanz after my surgery and thought I would follow up with my status as of now. Unfortunately, the second time wasn’t the charm as compared to the first time that I tried Xeljanz, but that is not to say that it doesn’t help. I do have considerable benefit from the drug and am probably 90% functional. I just am functioning with a moderate degree of pain. I am not complaining as at my age, pain is pretty much a part of life and I am grateful that I can still do most of the things that I want to do. I even work out with weights most of the time. If I have a bad day/week, I lay off but that is rare any more. Anyway, I hope this finds you all coping and thriving in spite of the RA and enjoying life as much as you can. – Dave

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  • By miaj

    Hi gduffy6 — hope it goes well for you. I’m still on xeljanz, it’s been about a year for me now (I think). It’s still working really well (although I have occassions when my ESR spikes up a bit and I need prednisolone). Other than that, I’m progressively feeling better and better. Just this last week my rheumatologist suggested I see how I go without methotrexate so I’ve just stopped that and the folic acid (yay!). I think, for me, the biggest benefit has been in much better energy levels, mood and just generally feeling more like I used to before I got sick.

    Nice to hear from you again too, DaveW. Sorry it hasn’t gone so well second time around — maybe things will improve over time. I know I’m still feeling better and better as time goes by. Always good to hear regardless of how well things are going. 😀 ~mia

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