Frequently asked questions

The most common symptoms of NMOSD can include blurry vision, blindness in one or both eyes, sleeping problems, painful spasms, weakness or paralysis in legs or arms, numbness or loss of sensation throughout the body, persistent hiccups, anxiety, depression, sexual dysfunction, brain fog, persistent nausea or uncontrollable vomiting, and bladder or bowel dysfunction.

Most patients experience NMOSD attacks (relapses) that can last for days, followed by recovery. Each relapse can cause new damage.

Most people with NMOSD test positive for anti-aquaporin-4 (AQP4) antibodies. A doctor can look for the AQP4 antibody using a blood test. If you think that you might have NMOSD, you can use the tool below to help start a conversation with your doctor at your next visit.

ULTOMIRIS is a prescription medication called a complement inhibitor. It's used to treat neuromyelitis optica spectrum disorder (NMOSD) in adults who are anti-aquaporin-4 (AQP4) antibody positive. ULTOMIRIS targets an important protein that contributes to central nervous system (CNS) damage. It is given as an intravenous (IV) infusion every 8 weeks.

It is not known if ULTOMIRIS is safe and effective for the treatment of NMOSD in children.

ULTOMIRIS is given through a vein by intravenous (IV) infusion over 1 hour, once every 8 weeks,* or 6-7 times a year.

If you are an adult with NMOSD, you will usually receive:

• a starting dose of ULTOMIRIS as an infusion by your doctor, and then 2 weeks later, you will start to receive an infusion of ULTOMIRIS once every 8 weeks
• ULTOMIRIS infusions can be administered by a healthcare provider at an infusion location or doctor's office. For some eligible patients, at-home infusions are also an option

*Two weeks after an initial loading dose. Minimum infusion times for ULTOMIRIS 100 mg/mL maintenance doses range from 30 minutes to less than 1 hour for most people, depending on body weight. If a side effect occurs during the infusion of ULTOMIRIS, the infusion may be slowed or stopped by the healthcare provider. After your infusion, your care team will monitor you for at least 1 additional hour for infusion-related reactions.

• ULTOMIRIS was FDA approved for adults with NMOSD who are anti-AQP4 antibody positive on March 22, 2024
• The FDA approved ULTOMIRIS for its first indication in a rare disease in December 2018

While the exact mechanism of ULTOMIRIS in NMOSD is unknown, ULTOMIRIS is a complement inhibitor that specifically binds to the complement protein C5. In the clinical trial for ULTOMIRIS in NMOSD, the majority (98.3%) of people had complete C5 inhibition by the end of the first infusion.

• Explore more information about ULTOMIRIS for NMOSD at ULTOMIRIS.com/nmosd
• Connect with your local Patient Education Manager at mynmosdpem.com
• Find a local event to hear from an NMOSD specialist at ULTOMIRIS.com/nmosd/join-our-events
• Your healthcare team is the best resource for decisions about your treatment

Do not receive ULTOMIRIS if you have a serious meningococcal infection at the time you would be starting ULTOMIRIS treatment.

The most common side effects (≥10%) of ULTOMIRIS during the clinical trial for NMOSD were:

• headache
• COVID-19 infection
• back pain
• joint pain (arthralgia)
• urinary tract infection

Tell your doctor about any side effect that bothers you or that does not go away.

These are not all the possible side effects of ULTOMIRIS. For more information, ask your doctor or pharmacist.

Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088.

There were ZERO relapses during the clinical trial for people taking ULTOMIRIS. In the clinical trial, ULTOMIRIS reduced the risk of an attack by 98.6% compared to placebo.

Talk to your doctor about making the transition to ULTOMIRIS. Transitioning from another treatment to ULTOMIRIS should be done at the discretion of your doctor, who will use their clinical judgment in deciding the appropriate course of action.

Use the NMOSD Symptom Tracker ahead of your next healthcare appointment to help the doctor assess how you're feeling on your current therapy.

The best first step is to talk to your doctor and ask if ULTOMIRIS is right for you. When you're ready, find an NMOSD specialist near you.

Download the Doctor Discussion Guide for questions you may want to ask.

Because of how ULTOMIRIS works in your body, ULTOMIRIS can reduce your immune system's ability to fight serious infections, like meningococcal infections. While ULTOMIRIS doesn't cause meningococcal infections, it increases your chance of getting one if you're exposed to the bacteria. That's why getting vaccinated before starting ULTOMIRIS is important.

Work with your doctor to get vaccinated before you start ULTOMIRIS.

If you've had a meningococcal vaccine before, you may need additional doses before starting ULTOMIRIS—talk to your doctor about whether a booster is needed to stay up to date.

Before taking ULTOMIRIS, you must complete or update 2 types of vaccinations against meningococcal infections at least 2 weeks before your first dose. If your doctor decides that you need urgent treatment, you should receive meningococcal vaccines as soon as possible.

If you have not been vaccinated, and treatment must be started immediately, you should also take antibiotics for as long as your doctor tells you. If you had a meningococcal vaccine in the past, you might need additional vaccines before starting ULTOMIRIS. Your healthcare provider will decide if you need additional meningococcal vaccines. Talk to your doctor if you are unsure if you are up to date with your meningococcal vaccinations.

NMOSD is a chronic, lifelong disease, and there is no known cure. Speak with your physician about your need for ongoing therapy.

As ULTOMIRIS and other medications can affect each other, tell your doctor about all the medications you take, including prescription and over-the-counter medicines, vitamins, herbal supplements, and vaccines you have had.

In the clinical trial, 48.3% of people taking ULTOMIRIS continued certain immunosuppressant therapies. Talk to your doctor about therapies you are currently taking and whether they may need to adjust your dose.

With the Alexion OneSource™ CoPay Program, you could pay as little as $0 for ULTOMIRIS if you have commercial insurance.*

Talk to your Alexion OneSource Support Specialist for more information on eligibility and financial assistance.

Additional eligibility requirements apply; see Terms and Conditions.

*The Alexion OneSource CoPay Program is not valid for patients covered by government insurance programs or other federal or state programs (including any state prescription drug assistance programs), including Medicaid, Medicare (including Medicare Part D), Medicare Advantage Plans, Medigap, Veterans Affairs, Department of Defense, or TRICARE. People residing in Massachusetts or Rhode Island are eligible for assistance with medication costs but are not eligible for assistance with infusion costs.

You can sign up for in-person or virtual events to listen to a doctor and PEMs talk about NMOSD, treatment options, and help on managing the condition.

Enroll in the Peer Connects program or call 1-877-576-7589 to get support from someone living with NMOSD. Speak one-on-one with an NMOSD ambassador who is taking ULTOMIRS, can relate to your experiences, and can answer questions you may have.

PEMs are here to support you on your NMOSD journey by helping you navigate your insurance coverage, understand your condition, and connect with others in the community. A local PEM can provide site-of-care disease or treatment education, as well as support in one-to-one or group settings.

Find a local PEM near you

If you are making the transition from SOLIRIS to ULTOMIRIS, you should receive your starting dose of ULTOMIRIS at the time of your next scheduled dose of SOLIRIS.

ULTOMIRIS is built on the foundation of SOLIRIS. Both treatments bind to and block complement protein C5, but ULTOMIRIS is designed to last longer so that you only need a maintenance dose once every 8 weeks (beginning 2 weeks after an initial starting dose).

While there are no clinical trials to compare ULTOMIRIS and SOLIRIS, frequency of administration is a key difference between them. SOLIRIS is administered once every 2 weeks after the initial doses, while ULTOMIRIS is administered every 8 weeks starting 2 weeks after the initial dose.