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Ultomiris (ravulizumab-cwvz) is a prescription medication approved by the U.S. Food and Drug Administration (FDA) to treat generalized myasthenia gravis in adults.
These insights are based on 207 comments about Ultomiris from MGteam members. These are the experiences of a small number of people and are not meant to be medical advice.
Ultomiris works by blocking a protein in the body called C5. This protein is part of the complement system, which is part of the immune system. By blocking C5, Ultomiris helps stop the formation of a group of proteins called the terminal complement complex.
The exact way Ultomiris works in generalized myasthenia gravis is not fully known. It is thought to reduce harmful protein buildup at the place where nerves connect to muscles. That may help improve muscle signaling and reduce symptoms.
Doctors prescribe Ultomiris when an adult has generalized myasthenia gravis and has tested positive for anti-acetylcholine receptor (AChR) antibodies. The medication is given as an intravenous infusion, which means it is delivered into a vein by a healthcare provider. Treatment starts with one infusion, followed by another infusion two weeks later. After that, it is given every eight weeks.
These insights are based on 207 comments about Ultomiris from MGteam members.Members who use Ultomiris often say the treatment experience can vary a lot from person to person. Across the community, many emphasize the importance of tracking how long benefits last, watching for side effects, planning around the infusion schedule, and staying in close touch with an MG specialist about symptom changes and other medications.
Keep track of when symptoms improve or return.
“I typically feel more symptomatic starting around the sixth week.”
Ask your doctor about tapering other medications and follow their guidance.
“I started Ultomiris a month ago, and the impact was profound and immediate. This means I will be getting off the other immunosuppressants. Most importantly prednisone.”
Work with an MG specialist and keep them updated.
“Once I found a doctor with his practice focused on MG, things got way better.”
Connect with others who understand life with myasthenia gravis. Join MGteam for free.
In clinical studies of Ultomiris for generalized myasthenia gravis in adults who are AChR antibody-positive, the most common side effects occurred in between 6 percent and 15 percent of people. These side effects include:
Ultomiris 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.
Alexion Pharmaceuticals, the manufacturer of Ultomiris, offers the OneSource patient support program. Eligible people with commercial insurance may pay as little as $0.
The program also offers educational materials, help understanding your health insurance coverage, support for financial concerns or gaps in coverage, information about infusion centers or other treatment location options nearby, and connections to community resources including a peer-to-peer program. To learn more, visit the Alexion site or call 888-765-4747.
Before starting Ultomiris, your doctor will confirm you have generalized myasthenia gravis and are positive for AChR antibodies.
You should be up to date on meningococcal vaccines for serogroups A, C, W, Y, and B for at least two weeks before your first dose. If Ultomiris must be started right away and you are not up to date on these vaccines, you should receive antibiotics and get vaccinated as soon as possible.
Tell your doctor if you have any allergies to ravulizumab-cwvz or any ingredients in Ultomiris.
Tell your doctor about all medicines you take, including prescription drugs, over-the-counter medicines, vitamins, and herbal supplements.
Let your doctor know if you have had recent infections or fever.
Do not start Ultomiris if you have a serious meningococcal infection.
If you miss an Ultomiris infusion, call your doctor right away.
If you are pregnant or planning to become pregnant, talk with your doctor. Do not breastfeed during treatment and for eight months after the final dose.
These answers are fact-checked by our editorial staff.
How effective is Ultomiris?
In a 26-week study of adults with generalized myasthenia gravis who were anti-AChR antibody-positive, people taking Ultomiris improved more than people taking placebo (an inactive treatment) on two standard tests that measure daily function and muscle strength. On the Myasthenia Gravis Activities of Daily Living (MG-ADL) scale, scores improved by 3.1 points with Ultomiris and 1.4 points with placebo. On the Quantitative MG (QMG) scale, which measures muscle weakness, scores improved by 2.8 points with Ultomiris and 0.8 points with placebo.
How often is Ultomiris taken for generalized myasthenia gravis?
For adults with generalized myasthenia gravis, Ultomiris is given by IV infusion. You get a starting dose first. Then you get a maintenance dose two weeks later. After that, you get a dose every eight weeks. The dose is based on body weight. If you switch from Soliris, the starting dose of Ultomiris is given at the time of your next scheduled Soliris dose.
What should people with generalized myasthenia gravis know about infection risk before starting Ultomiris?
Ultomiris can raise the risk of serious meningococcal infections. These infections can be life-threatening or fatal, even in people who have been vaccinated. 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 needs to start sooner. If treatment must start right away, meningococcal vaccines should be given as soon as possible and antibacterial drug protection is recommended.
On MGteam, people share their experiences with myasthenia gravis, get advice, and find support from others who understand.
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