Table 2.

Survey results, response to the open-ended question.

5. How did remission feel? Or: How do you think it should feel?
  “Remission has been experienced when pain and fatigue have been minimal and blood results have shown no active disease. Pain is a constant during remission, due to the damage caused by the disease when it was active. This is quite different to the pain of active disease. Mainly because the pain of active disease is always combined with debilitating fatigue that causes a psychological strain that has consequences through all daily life activities and that of your families.”
  “Taking into consideration any damage to joints, functional ability and cognitive ability would return to “my” normal before RA. Fatigue would improve because disease is no longer active and because I wouldn’t be working so hard to retain information, read, perform ADL, etc. However, with drug induced remission, fatigue from certain meds may happen and would be totally acceptable to me. Joint damage would cease. No swollen joints. Assessing these 2 areas is more important to me than ESR. ESR does not accurately reflect my disease activity and my response to treatment.”
  “For years now, there is a big difference between the “objective data” of my rheumatologist and how I experience the disease. That made me insecure in the beginning. I am still curious to hear the data from my rheumatologist (on blood results, x-rays, etc.), but when we discuss my meds I trust my own “subjective experience” more.”
  “I think remission should be absence of pain and fatigue for a period of at least 6 months.”
  • ADL: activities of daily living.