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Last summer I was diagnosed with inflammatory arthritis after years of unexplained symptoms such as pain, muscle weakness, dry eyes and fatigue. I had been to many doctors and had dozens of tests, but I found no answers until a few knuckles and fingers on my left hand started to visibly swell. Two months later, with no sign of the swelling abating, I returned to a rheumatologist I had been seeing and he ordered an ultrasound. The ultrasound showed chronic, inflammatory damage everywhere they checked (fingers, wrist, elbow, toes and ankle). I had thickenings, calcium deposits, active swelling of the synovial membrane of five joints, and what the doctor described as "the joint degeneration of a much older person" (I'm in my 20's). When asked to point out my painful areas in each joint the doctor said I was "spot on" and explained what the ultrasound showed where I pointed. I was diagnosed with inflammatory arthritis, likely RA, but since my presentation had been atypical the rheumatologist didn't yet want to make the distinction between spondyloarthropathies and rheumatoid arthritis. I was started on methotrexate the next day. It felt great to finally have a name for my mystery illness and the hope of improving with treatment.
After five months on MTX I still had pain, fatigue and occasional flares, so my rheumatologist added Humira and arranged to see me again after three months on both treatments. I haven't had a flare since starting Humira and I've noticed I'm able to work more hours, but I still had some pain and fatigue. I wasn't feeling as good on treatment as I hoped I would. At my rheumatologist appointment, the doctor said that since I was still having symptoms on both medications there was probably no active inflammation to treat. He ordered an MRI with contrast of just my left hand. He called me the following day to report that the MRI showed no active inflammation in my hand and said that the ultrasound done last summer must have been wrong since the MRI was a better method. He then took away my diagnosis, my medications and cancelled my followup appointment. Any question I asked was met with a response of "the MRI showed no inflammation."
So here I am, back to being undiagnosed but with more confusion than ever. It was my impression that no active inflammation would mean the medications were working, not that the diagnosis would be thrown out. I was hoping some community members would share their answers to the following questions to help me to understand.
Has anyone ever experienced having their diagnosis and/or medications taken away after the inflammation improved? For the people still diagnosed and on medication, do you feel 100% on your meds, back to your normal self? If so, how long did it take to feel good on the medications? Has anyone been told that their inflammation changed to just 'swelling'?
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