FAQs About Ultomiris for aHUS

Emily Malcolm, PhD avatar

by Emily Malcolm, PhD |

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aHUS Registry, FAQs

Ultomiris (ravulizumab-cwvz) is a treatment for atypical hemolytic uremic syndrome (aHUS) that was developed by Alexion. The therapy is designed to treat people with low levels of circulating red blood cells.

Here are some frequently asked question and answers about Ultomiris:

How does it work?

In aHUS, the complement system, which is a part of the immune system, is activated when it shouldn’t be. Ultomiris contains an antibody that blocks a key step in the activation of the complement system. That, in turn, prevents the activation of downstream signaling.

Can I take it at home?

No. Doctors must administer Ultomiris as an intravenous or IV (into-the-vein) infusion at a hospital or clinic. The infusion takes several hours.

How often do I need treatment?

Two weeks after the initial (loading) treatment, you will need to start infusions every four or eight weeks. This is known as a maintenance dose. Your doctor will determine how frequently you need maintenance doses.

If I’m currently on Soliris, can I take Ultomiris?

You can not take these two medicines at the same time. However, your clinician may choose to switch your treatment from Soliris. If you are changing therapies, you can have your first dose of Ultomiris two weeks after your last dose of Soliris.

What side effects does it cause?

Ultomiris can cause various side effects, to include blood clots, shortness of breath, and abdominal pain. Male patients also may experience erectile dysfunction.

The treatment affects the immune system and may make you more susceptible to infection, in particular meningococcal illnesses. You should receive a vaccine against meningococcal infections several weeks before starting treatment. You could still get meningococcal disease while taking Ultomiris even if you have had a vaccine.

How can I get access to Ultomiris?

Your doctor can enroll you in a program called Ultomiris REMS, or Risk Evaluation and Mitigation Strategy. Once registered, your doctor will counsel you about the risks associated with taking the medication, and ensure you have received vaccinations against meningococcal infections before you begin treatment. You also will receive a patient safety card that explains the side effects and risks of the treatment.

What are some reasons I shouldn’t receive Ultomiris?

If you haven’t received vaccination against meningococcal infections, you should not take Ultomiris.

Notably, researchers have not tested this medication in pregnant women, so they don’t know if it would have an effect on a developing baby. If you are pregnant or planning to become pregnant, you should not take the medication. Like other antibodies, Ultomiris may pass to the baby during breastfeeding, so nursing mothers also should not take it.


Last updated: July 20, 2020


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