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Soliris (eculizumab) is a prescription medication approved by the U.S. Food and Drug Administration (FDA) for treating generalized myasthenia gravis in adults and children ages 6 and older who test positive for anti-acetylcholine receptor antibodies.
In addition to generalized myasthenia gravis, Soliris is also approved for certain people with paroxysmal nocturnal hemoglobinuria, atypical hemolytic uremic syndrome, and neuromyelitis optica spectrum disorder.
These insights are based on 130 comments about Soliris from MGteam members. These are the experiences of a small number of people and are not meant to be medical advice.
Soliris works by blocking part of the immune system called complement protein C5. The exact way it works in generalized myasthenia gravis is not fully understood. Researchers believe it helps reduce damage at the neuromuscular junction, where nerves send signals to muscles.
Soliris is prescribed for people ages 6 and older with generalized myasthenia gravis who test positive for anti-acetylcholine receptor antibodies. The medication is given as an intravenous infusion, which means it is delivered into a vein. In adults, it is given weekly for the first five weeks, then every two weeks. In children, the schedule depends on body weight and may continue every two or three weeks.
These insights are based on 130 comments about Soliris from MGteam members.Members who use Soliris often say that planning ahead, tracking how you feel, and staying in close touch with an MG specialist can make treatment easier to manage. Results can vary, with some people noticing improvement quickly and others needing more time or a different treatment plan.
Get meningitis vaccines before starting treatment.
“My neurologist wants me to have the infusion med, Soliris. But first I have to have the meningitis vaccine.”
Track symptoms and tell your doctor when treatment seems to wear off.
“Now on Soliris every two weeks, but it seems not to last two weeks without having symptoms return.”
Give it some time, because the response can vary.
“Today I have my third infusion of Soliris. This has seemed to help me a bit, and I have gained energy and am able to eat pretty normally.”
Connect with others who understand life with myasthenia gravis. Join MGteam for free.
In clinical studies of Soliris for generalized myasthenia gravis in adults who were anti-acetylcholine receptor antibody positive, the most common side effects affected about 7 percent to 15 percent of people. These side effects included:
Side effects seen in clinical studies for older pediatric patients were similar to those seen in adults. Side effects for younger pediatric patients are expected to be the same.
Soliris can cause serious side effects that need immediate medical attention. These include:
Get medical help right away if you think you are having a serious reaction.
Alexion Pharmaceuticals offers the Alexion OneSource CoPay Program. People with commercial insurance may be able to pay as little as $0.
The Alexion OneSource program provides information about insurance coverage and financial assistance options related to Soliris. To learn more, visit the Soliris OneSource website or call 888-765-4747.
Before starting Soliris, you should be up to date on meningococcal vaccines (serogroups A, C, W, Y, and B). These vaccines should be given at least two weeks before your first dose. If Soliris must be started urgently and you are not up to date, you should receive antibiotics and get vaccinated as soon as possible. Children should also receive vaccines to help prevent Streptococcus pneumoniae and Haemophilus influenzae type B infections.
Tell your doctor if you have any allergies to eculizumab or any ingredients in Soliris.
Tell your doctor about all medicines you take, including prescription drugs, over-the-counter medicines, and supplements.
Let your doctor know if you have an infection or fever.
Do not take Soliris if you have an unresolved serious Neisseria meningitidis (meningococcal) infection when starting treatment.
If you miss a Soliris infusion, call your doctor right away.
If you are pregnant, planning to become pregnant, or breastfeeding while taking Soliris, talk with your doctor.
How effective is Soliris?
In a 26-week study of adults with generalized myasthenia gravis, people taking Soliris had a 4.2-point improvement in MG-ADL score, compared with a 2.3-point improvement with placebo. People who took Soliris had greater improvement in daily function than those who took a placebo. MG-ADL measures how myasthenia gravis affects daily activities, and a bigger improvement means fewer symptoms.
How often is Soliris taken for myasthenia gravis?
For adults with generalized myasthenia gravis, Soliris is given by intravenous infusion at 900 milligrams weekly for the first four weeks, then 1,200 milligrams one week later, and then 1,200 milligrams every two weeks. In adults, each infusion is usually given over 35 minutes. After each infusion, monitoring for at least one hour is recommended.
What infection precautions are needed before and during Soliris treatment for myasthenia gravis?
Soliris increases the risk of serious, life-threatening meningococcal infections. Meningococcal vaccination 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 sooner. If urgent treatment is needed before vaccines are up to date, antibiotics should be given to help prevent infection, and vaccination should happen as soon as possible. People taking Soliris should be monitored for early signs of meningococcal infection, because vaccination does not fully remove this risk.
Can Soliris be used with other medicines for myasthenia gravis?
Some medicines can affect how well Soliris works. In people with generalized myasthenia gravis, intravenous immunoglobulin (IVIG) given on a regular schedule may require a supplemental Soliris dose, while IVIG used as acute rescue therapy does not require one. Neonatal Fc receptor blockers can lower Soliris exposure and may reduce its effectiveness, so close monitoring is recommended.
On MGteam, people share their experiences with myasthenia gravis, get advice, and find support from others who understand.
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