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“Your RA is not that bad”

I was diagnosed in 1998. Fatigue and constant joint and body pain followed by a diagnosis of Parvovirus. That illness flipped the RA switch…also fibromyalgia diagnosis. I had to be put on permanent disability in 2005. I have been on many meds, Humira, Enbrel, Remicade, and methotrexate. Many help but short term. I take prednisone low dose daily, pain meds, anti-depressant. Fast forward, recently had Vectra blood work done to measure disease activity. Test came back with moderate disease activity. I basically have it worse in my knees (steroid injections every couple of months and fluid drained). Anyway my rheumatologist feels I’m not that sick where I need new meds…went to him this past Friday in pain, swollen knees, in tears, still feels I’m good with only meds and adding Celebrex. Frustrated lately… any suggestions?

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  • Linda Evans author
    4 years ago

    Davee, I also have changed doctors several times, I am thinking of going back to New York for treatment, my hands are now beginning to deform and my rheumatologist still feels that’s ok,as much as I like him it’s time to move on. Good luck to you too! This can be a long road!

  • Davee Jones
    4 years ago

    Over the past two years, I’ve changed rheumatologists three times and been to countless other doctors. I was first told I had SLE, then, a lupus research specialist said although I had something, she didn’t know what it was, the third rheumy said I had fibromyalgia. When my blood work came back with obvious levels outside the normal ranges, I consulted yet another rheumy. I finally have a doc who listens to me and wants to help. Good luck, I’d really find another doctor if I was you. This is about you and your quality of life.

  • Mariah Z. Leach moderator
    4 years ago

    Hi Linda ~ Thank you for taking the time to share your story. Sorry to hear that you are having trouble finding the right treatment plan. It is your rheumatologist’s job to make sure you find a treatment plan that YOU are happy with – so if you don’t feel like he/she is supporting you or giving you appropriate options it may be time to find a new rheumatologist. Hang in there and remember that we are here to support you!
    ~Mariah~ (Site Moderator)

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