Hemolysis in PNH
With C5i treatments, some people with PNH may continue to have symptoms According to this survey, some people continued to have low Hb levels, ongoing fatigue, and the need for transfusions.
The impact of hemolysis in PNH Ongoing hemolysis may be causing your PNH symptoms
This could mean hemolysis is not under control.
Paroxysmal nocturnal hemoglobinuria (PNH) is a rare blood disease that involves the body’s immune system acting irregularly. In PNH, the immune system attacks and destroys its own red blood cells in a process called hemolysis. If hemolysis is not addressed, it can cause lower than normal levels of red blood cells and hemoglobin (Hb) in your blood. This may cause ongoing PNH symptoms, like fatigue, that force you to make compromises in your daily life.
In this survey, people reported:
Not achieving Hb levels ≥10.5 g/dL *
on eculizumab (20/32)
on ravulizumab (47/82)
Also, with anemia caused by low Hb levels, people with PNH may need to get frequent transfusions, which can take a toll on the body over time.
Ongoing fatigue †
on eculizumab (31/35)
on ravulizumab (65/87)
Ongoing need for transfusions ‡
on eculizumab (12/23)
on ravulizumab (7/31)
• 122 people taking a C5i treatment for their PNH were surveyed (35 received eculizumab, 87 received ravulizumab) • Most people surveyed (97%) had been taking C5i treatment for ≥3 months Possible limitations of the survey • A small number of people surveyed • People not satisfied with their current C5i treatment may have been more motivated to participate • Responses being subjective due to how people interpreted and reported their experiences • The results cannot be generalized to all people with PNH Findings from a US survey of people with PNH taking C5i treatment
C5i=C5 inhibitor.
‡ In patients who had a lifetime history of a transfusion and were on C5i treatment for at least 1 year. The need for transfusions was defined as 1 or more transfusions in the past 12 months. † Fatigue was measured using the Functional Assessment of Chronic Illness Therapy-Fatigue (FACIT-Fatigue) scale, which is a type of survey that collects information about the impact of fatigue on different parts of daily life. The scale ranges from 0 to 52. Higher scores mean less fatigue. * Based on responses from 114 of the 122 survey participants who reported their Hb levels.
Don't delay! Talk to your healthcare provider about your ongoing PNH symptoms and available treatment options.
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