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New to this site and on Xeljanz

Hi I new to this site and would like to share my story and find out if anyone else is on Xeljanz and find that it is helping them at all… I have been diagnosed with RA since 2004. I have been on almost every combination of medication that one can think of and have been on just about every Biologic from Humira, Remicade, Rituxan, Orencia, Simponi, Enbrel, Acterma, and Xeljanz. And probably a few others which I don’t even remember at this point. The longest I have been on any biologic was 2 years and that was Orencia and then they apparently stop working and my Rheumatologist decided it is then time to switch to yet another Biologic.

For DMARDS I have and am currently on Methotrexate. I have been on MTX tablets and injection, and was on Plaquenil and Arava in the past.
In the most recent years I can count on my fingers how many days I have been pain free. That is with taking Oxycondone and Oxycontin which is being managed by my pain management doctor. Even with all that I am on, I still am having difficulty with pain, stiffness, and trying to feel better. Every doctor I go to says they want me to exercise and keep moving. I do try, but it is not easy to exercise when I am in pain the majority of the time.
I do take a line dancing class 1-2 times a week which I do enjoy. I plan to start a swim exercise class once the weather warms up a bit. I have an adorable grandson whom I take to Gymboree class once a week when the pain does not try to hold me back and I go to my son’s house to allow my son some free time when I can as he works from home and I watch the grand baby.

Among some of my other diagnosis are Asthma, Hypertension, and Reactive airway disease. I have also had a few operations: The latest one last year March 2016, being spinal surgery C2 and C4, some was related to RA, I had a right total knee replacement in October 2013, and sinus surgery in September, 2015. It has been a rocky road needless to say.

I recently started on Xeljanz in December 2016. For a period of time I was off all DMards and Biologics to allow for healing to take place. Not easy. In being off everything except pain medicine I do know that the Xeljanz is doing some good. I would like to know if anyone is on the Xeljanz and how do you find it is helping you. My prayers and well wishes are with you all.

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Comments

  • kikikk
    2 years ago

    I have been on many RA meds and I did take Xeljanz a couple of years ago. My husband called it “the miracle drug.” I was able to train for and walk three half marathons within an 8 month time period. After about a year and a half, it stopped working completely. Therefore, I was on to Actemra which gave me staff infections. Now, I’m starting Orencia. I hope the Xeljanz works for you. I have never felt better than when I was on Xeljanz and it was working. Good Luck!

  • Tamara Haag moderator
    2 years ago

    Thanks so much for sharing your story! I’m sorry you’ve faced so many challenges on your RA journey, and I am crossing my (swollen) fingers that Xeljanz will work great for you and for a longer period of time than the other biological did.

    I did take Xeljanz, but I never noticed a difference in it. Interestingly, my sister also has RA and it worked really well for her. She was on it for 3-4 years and then it started bothering her stomach. It was her favorite biologic she’s been on (I think she’s been on four). I was amazed at how well it worked for her yet did nothing for me. RA is such a bewildering disease!

    Thanks again for reaching out, and we welcome you to keep us posted on how you do after some more time on Xeljanz. Good luck with the swimming as well. Swimming is definitely the least painful exercise for my joints I’ve found.

    Wishing you all the best,
    Tamara

  • radiogirl
    2 years ago

    I just started Xeljanz ER today. I was diagnosed with RA in March and have been Sulphasalazine and Prednisone 5 mg. I take Nucynta for pain and Cymbalta for pain and depression. The Sulphasalazine didn’t help any that I could tell. I think the Prednisone may be helping a little and praying Xeljanz will help. My rheumy said we should know in about a month if it’s going to work for me. From what I’ve read so far, it seems many DMARDS and Biologics can take several months to see any improvement.

    Hope you can get your meds worked out to give some relief. Hugs and blessings to you!

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