FAQs About Soliris for aHUS

Emily Malcolm, PhD avatar

by Emily Malcolm, PhD |

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aHUS Registry, FAQs

Soliris (eculizumab) is a medication developed by Alexion to treat atypical hemolytic uremic syndrome (aHUS).

Here are some frequently asked question and answers about Soliris:

How does Soliris work?

In aHUS, a part of the immune system called the complement system becomes active when it shouldn’t be. Soliris contains a humanized antibody that binds to the last protein in the complement pathway, preventing it from completing the activation of the immune response. Of note, antibodies are proteins made by a type of white blood cell.

How can I take it?

Your doctor must administer the medication as an intravenous (IV) or into-the-vein infusion at a hospital or clinic. The infusion takes 35 minutes for adults and several hours for children. The hospital or clinic monitors patients for an hour after the infusion to ensure they aren’t having an allergic reaction to the medication.

How often do I need treatment?

You’ll need an infusion every week for five weeks. After the fifth week, you’ll receive the medication every two weeks; doctors sometimes call this the maintenance dose. Some patients may need treatment more frequently. Your doctor will determine how frequently you need maintenance doses, factoring in your age, weight, and other considerations.

How can I stop taking Soliris?

Doctors need to monitor your disease while you are taking Soliris and for three months after you stop using the medication.

Can I switch from Soliris to Ultomiris?

Yes. Ultomiris is another medication for aHUS, also developed by Alexion. While you can’t take both medications at the same time, you can switch from Soliris to Ultomiris. Two weeks after your last dose of Soliris, you can have your first dose of Ultomiris.

What side effects does it cause?

Soliris can cause various side effects, including severe allergic reactions, headache, diarrhea, high blood pressure, vomiting, fever, and low red blood cell count, called anemia.

The medication also affects the immune system. It can make you more susceptible to illness and infections, in particular meningococcal disease. If you have not previously received a vaccination against meningococcal infections, your doctor will vaccinate you a few weeks before you start infusions. Please note that you could still get meningococcal disease while taking Soliris even if you have a vaccine.

What is an allergic reaction during an infusion?

The symptoms of an allergic reaction can include chest pain, trouble breathing, and swelling of the face, tongue, or throat. Some patients may feel faint or pass out. If you experience an allergic reaction during an infusion, your doctor will stop or slow the infusion.

How can I get access to Soliris?

Your doctor can enroll you in the Soliris REMS (risk evaluation and mitigation strategy) program. You and your physician must discuss the risks associated with taking Soliris and make sure that you have received a meningococcal vaccination. You also will receive a patient safety card for you to keep that explains the side effects and risks of the treatment. It may be helpful for you to keep this card with you, along with a list of any other medications you take.

What are some reasons I shouldn’t receive Soliris?

If you haven’t had a vaccine against meningococcal infections, you should not take Soliris.

Doctors don’t know if the medication will affect fetal development, so they recommend that you do not take Soliris if you are pregnant or thinking of becoming pregnant. The medication may also pass through breast milk to the baby during nursing, so you should not breastfeed while taking Soliris.


Last updated: July 27, 2020


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