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New drug? Has anyone experienced Tofacitinib/Xeljanz?

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

  1. 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)

    1. 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

      1. 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)

        1. 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.

          1. 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.

          2. 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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