A sub-optimal treatment response is when your paroxysmal nocturnal hemoglobinuria (PNH) is not being controlled adequately by your current treatment. This can result in PNH symptoms that persist or reappear. But it doesn't have to stay this way.
Fatigue, low hemoglobin and regular blood transfusions are just a few of the signs and symptoms of a sub-optimal response to your current treatment.
Medications used to treat a sub-optimal response work differently than those used as a first treatment.
How you feel is as important as your blood test results when it comes to recognizing a sub-optimal response.
When Catherine experienced a sub-optimal response, she learned everything she could about PNH in order to advocate for a different treatment.
Even before Barry was diagnosed with PNH, he discovered that it was important to be prepared for appointments and persistent in the search for answers.