Eculizumab (Soliris) is the only drug approved by the U.S. Food and Drug Administration (FDA) and the European Medicines Evaluation Agency (EMEA) to treat PNH. It works by making your complement system less active.

Benefits of Soliris

Soliris has many benefits. It has been found to:

  • Improve anemia
  • Reduce or get rid of the need for transfusions
  • Reduce the breaking apart of red blood cells (hemolysis) over both the short and the long term
  • Reduce the risk of blood clots

Soliris does not help increase white blood cell count or platelet cell count.

How You Take It

Your doctor will give you an IV at the office or at a special center. The procedure usually takes about 35 minutes. You will probably get an IV once a week for the first 4 weeks. Starting in the 5th week, you will get a slightly higher dose of Soliris every 2 weeks.

Common Side Effects of Soliris

If you take Soliris, you may:

  • Feel sick to your stomach
  • Get a runny nose or colds
  • Have a headache or back pain

Rare Side Effects of Soliris

If you take Soliris, you have a higher risk of being infected with the bacteria that can cause a type of meningitis.  Patients should be immunized with a meningococcal vaccine at least 2 weeks prior to administering the first dose of Soliris, unless the risks of delaying Soliris therapy outweigh the risks of developing a meningococcal infection.

Some doctors worry that if PNH red blood cells are no longer destroyed, they may build up in the blood. In theory, if you were to stop taking Soliris, large numbers of those cells could be destroyed. However, several patients stopped taking Soliris gradually, and they did not have any severe problems as a result.