Why do I have progression despite treatment/decent labs?

Hello all. I was diagnosed with RA about five years ago. I’ve been on various meds with the current being Xeljanz. My issue is that although the labs look ok, I can feel myself declining. Getting up from chairs is becoming very painful, walking extended lengths about kills my knees. If I work longer than 8 hours my hands are like marshmallows (I type all day). So, I’m not trying to sound negative but honestly I’m just worried for what my future holds. How do I know how much of this is RA and how much does this mean I need to be working out and strengthening my knees, etc? Is this just the normal pattern of events? Thanks for any advice. I’m middle aged so I really don’t want to lose all my mobility this soon…..


Community Answers
  • Kimberly
    6 months ago

    Hi Monet2000. I have no story to tell yet. I’ve been on Simponi and now Orencia for the past 5 months. Last infusion made my hands flare up the same evening. I had infusion yesterday and I feel horrible. Hands/wrists swollen and numb, joints popping and cracking. Yesterday afternoon I had 3 bouts of chest pain. Felt like someone punched me between my boobs. And beyond exhausted, feels like all my blood and bone matter has been sucked out of me. I don’t know if it’s the med or progression of RA. I had been on Rayos (extended release Predisone) for about a year. It kept all swelling and pain at bay. But I don’t wanna be on a steroid forever and because I will be taking Xeljanz my doctor stopped it and Orencia. But I have had no popping, pain or any active issues with my hands like I have had in past when I stopped Rayos.
    I don’t know what is going on. I didn’t realize that it could progress so fast until reading your post. I don’t know what’s going or not going on right now.
    That being said, my doctor ordered Xeljanz XR (Orencia & Rayos) and now will be on Xeljanz XR when it goes through the approval process. I’ve read as much as possible about it as I’m sure you have but am also in the dark. I just wanted to say hi and maybe we can see what’s going on with us and our Xeljanz experience. Keep your fingers crossed! Whoops! I forgot. We can’t because it hurts!!
    Kimberly

  • Kimberly
    6 months ago

    Monet2000
    I’m sorta middle age… 50 in September!!!

  • hburks1977
    7 months ago

    I’ve had significant progression aggressive progression in the matter of 12 months from a stage 1 to a stage 3. Please see my post above any input you have would be greatly interested in because I’m scared to death Sarah positive stage 1 when I was diagnosed which you know how to flare once every maybe once or twice in that year versus stage 3 and I’ve been basically confined to the house for 6 months straight since October please keep in touch.

  • Richard Faust moderator
    7 months ago

    Hi Monet2000. Sorry you are having these issues. Have you had a chance to talk to your doctor about the discrepancy between your symptoms and lab results? Lab results don’t always tell the whole story. For your protection we cannot give medical advice over the internet. A number of things could cause you to still feel bad, from RA progression to a comorbidity to side effects (and any number of other things). This article from our editorial team looks at RA stages and progression: https://rheumatoidarthritis.net/what-is-ra/stages-and-progression/. Hopefully others will respond with their experiences. Wishing you the best. Richard (RheumatoidArthritis.net Team)

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