Experiencing fatigue, low hemoglobin or regular blood transfusions?

These are signs of a sub-optimal response to PNH treatment.

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.

Learn more about sub-optimal response and how it's managed through the experiences of real patients and physicians.

When is it a sign of a sub-optimal response?

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.

Watch: When is it a sign of a sub-optimal response?

What are the treatments for a sub-optimal response?

Medications used to treat a sub-optimal response work differently than those used as a first treatment.

Watch: What are the treatments for a sub-optimal response?

How do you talk to your doctor about your sub-optimal response symptoms?

How you feel is as important as your blood test results when it comes to recognizing a sub-optimal response.

Watch: How do you talk to your doctor about your sub-optimal response symptoms?

See how Catherine navigated 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.

Watch: See how Catherine navigated a sub-optimal response

Watch how Barry advocated for his PNH

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.

Barry Katsof thumbnail YouTube video

Think you might be experiencing a sub-optimal response?

Don't be afraid share your concerns or ask questions about your PNH or treatment. Openly communicating with your doctor can help them make treatment recommendations that are tailored to you.