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Zilbrysq (zilucoplan) is a prescription medication approved by the U.S. Food and Drug Administration (FDA) to treat generalized myasthenia gravis (gMG) in adults.
These insights are based on 62 comments from MGteam members about Zilbrysq. These are the experiences of a small number of members and are not meant to be medical advice.
Daily self-injection at home avoids infusion center visits and becomes easier with practice and a daily routine.
Strength, energy, and breathing sometimes improve within the first couple of months.
Limb weakness often improves more than eye symptoms.
Eye symptoms, including droopy eyelids and double vision, may improve less.
Injection-site reactions, diarrhea, nausea, and upper respiratory infections can happen.
Meningococcal vaccination and infection precautions add extra steps before treatment.
Zilbrysq is a medication that affects the immune system. It blocks an immune system protein called complement component 5, or C5. This helps stop the body from making a harmful protein group called C5b-9. In gMG, this protein group may affect the area where nerves communicate with muscles. By reducing this damage, Zilbrysq may help improve muscle weakness. Researchers still don’t fully know exactly how it works.
Doctors prescribe Zilbrysq for some adults with gMG. It is one of several treatment options for gMG. The medication is given as an injection under the skin once a day. It comes in a single-dose prefilled syringe, and a healthcare provider can teach you or a caregiver how to give the shots at home.
These insights are based on 62 comments from MGteam members about Zilbrysq.Members who use Zilbrysq often say it helps to keep in close contact with their neurologist, especially when starting treatment, watching for side effects, or managing infection risks. Many also describe building a daily routine around self-injections and giving the medication time to see the full effect, since results can vary from person to person.
Talk to your doctor about vaccines and infection risks.
“You should talk to your MG doctor regarding vaccinations.”
Build a daily routine around self-injections.
“I’m usually up early, and I have a particular regimen I follow every morning.”
Keep track of side effects and tell your doctor.
“The drug can have side effects of injection site irritation and tummy upsets.”
Notice which symptoms improve and which still need attention.
“The drug Zilbrysq has helped with strength and fatigue, but not my eyes.”
Connect with others who understand life with myasthenia gravis. Join MGteam for free.
These are the most common side effects seen in people with gMG in clinical studies of Zilbrysq:
These side effects were reported in about 11 percent to 29 percent of people. They were more common in people taking Zilbrysq than in those taking a placebo, which has no active ingredient.
Zilbrysq can cause serious side effects that require immediate medical attention. These include:
Get medical help right away if you think you are having a serious reaction.
UCB, the manufacturer of Zilbrysq, offers the Zilbrysq Copay Assistance Program. Eligible people with commercial insurance may pay as little as $0 for Zilbrysq.
The Zilbrysq Copay Assistance Program also offers help with reviewing insurance coverage and potential financial assistance options. To learn more, visit the company’s website or call 844-669-2731.
Before starting Zilbrysq, your doctor will test your amylase and lipase levels (blood tests that help check your pancreas).
Before starting Zilbrysq, you should get vaccinated against meningococcal infection (serogroups A, C, W, Y, and B) at least two weeks before your first dose, unless your doctor decides it is riskier to wait. If you need to start Zilbrysq right away and are not up to date on these vaccines, your doctor may prescribe antibiotics and give the vaccines as soon as possible.
Tell your doctor if you have any allergies to zilucoplan or any ingredients in Zilbrysq.
Tell your doctor about all medicines you take, including prescription drugs, over-the-counter medicines, and supplements.
Also, let your doctor know if you have an infection or fever.
Do not take Zilbrysq if you have a serious meningococcal infection when you are starting Zilbrysq treatment.
If you miss a dose of Zilbrysq, inject it as soon as possible that day. Then take your next dose at your regular scheduled time. Do not inject more than one dose in a day.
If you are pregnant, planning to become pregnant, or breastfeeding while taking Zilbrysq, talk with your doctor about the risks and benefits.
These answers are fact-checked by our editorial staff.
How effective is Zilbrysq?
In a 12-week study of adults with gMG, people taking Zilbrysq showed more improvement by week 12 than those taking a placebo. The MG-Activities of Daily Living scale measures how much gMG affects everyday tasks. On average, these scores improved by 4.39 points with Zilbrysq versus 2.30 points with a placebo. Quantitative Myasthenia Gravis scores, which measure muscle weakness, improved by 6.19 points with Zilbrysq compared with 3.25 points with a placebo. By week 12, 73.1 percent of people taking Zilbrysq had at least a 3-point improvement in daily living scores, compared with 46.1 percent on a placebo.
How long does Zilbrysq take to work for generalized myasthenia gravis?
In the clinical study, Zilbrysq began blocking part of the immune system by the end of the first week, and this effect continued throughout the 12-week treatment period. Clinical benefit was shown at week 12. The study does not say exactly how quickly each person may notice a change.
What infection precautions are needed before starting Zilbrysq for generalized myasthenia gravis?
Zilbrysq works on the immune system and can decrease the ability to fight infections. This increases the risk of acquiring a serious meningococcal infection. Meningococcal vaccines for serogroups A, C, W, Y, and B should be completed or updated at least two weeks before the first dose, unless treatment must start right away. If treatment must start urgently and vaccines are not up to date, antibiotics should be given as directed, and the vaccines should be given as soon as possible. People taking Zilbrysq should watch for signs of infection and get medical help right away if symptoms happen. They should carry the patient safety card during treatment and for two months after the last dose.
What side effects and tests should people know about with Zilbrysq for generalized myasthenia gravis?
The most common side effects in people with gMG were injection site reactions, upper respiratory tract infections, and diarrhea. Pancreatitis and pancreatic cysts have also been reported, so blood tests for amylase and lipase should be checked before starting treatment. People should contact their healthcare provider right away if they have stomach pain that does not go away, especially if it is severe, goes to the back, or happens with vomiting.
On MGteam, people share their experiences with myasthenia gravis, get advice, and find support from others who understand.
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