Challenges of Paroxysmal Nocturnal Hemoglobinuria

Challenges of PNH

Some of the challenges of PNH

The most common treatments available today are called C5 inhibitors and are given by infusion.

C5 inhibitors only address intravascular hemolysis (IVH), not extravascular hemolysis (EVH). This can lead to ongoing hemolysis and lower-than-normal hemoglobin levels.

In one study of 41 patients, 63% of people on a C5 inhibitor treatment showed signs of ongoing hemolysis. 63% of people on treatment continued to experience some form of hemolysis, in which hemoglobin levels below 11 and/or blood transfusions were required.

You may still need red blood cell transfusions

~1 out of 3 people on C5 inhibitor treatments may still require blood transfusions.

Ongoing hemolysis is a sign that your PNH may not be fully controlled

Most PNH treatments require infusions

Most treatments require scheduled infusions or hospital and clinic visits, which can cause people to miss out on important moments and activities.

You may feel like your only choice is to cope in silence or manage on your own. But that doesn’t have to be the case. Speaking up about your struggles to others can help you feel more supported.

Here's what you can do now

See what's happening with PNH

C5, complement 5; EVH, extravascular hemolysis; IVH, intravascular hemolysis; PNH, paroxysmal nocturnal hemoglobinuria.