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Real members of MGteam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Does anyone have experience with Ultomiris? My neurologist says this is the next step.

A MGteam Member asked a question 💭
Fallon, NV
September 7
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Answer Summary

Members shared personal experiences with Ultomiris and other MG treatments, including Mestinon, Cellcept, IVIG, and Vyvgart, while one member... Read more

Members shared personal experiences with Ultomiris and other MG treatments, including Mestinon, Cellcept, IVIG, and Vyvgart, while one member prepares to start Ultomiris in October after continued flares and a crisis. Several members described difficult side effects from Cellcept, including extreme fatigue and muscle weakness, and one shared developing Type 2 diabetes likely linked to the medication. A recurring theme was the emotional challenge of managing a complex illness, with members offering each other encouragement, prayers, and perspective, including the reminder to take things one day at a time.

A MGteam Member

So Carol, my oldest son put it in perspective for me. He told me that it is easier to treat diabetes than it is the MG. After I thought about it, he is right. There is all kinds of options for diabetes but not breathing. Hope that helps.

September 8
MGteam

Quite a few MGteam members have discussed Ultomiris (ravulizumab)! It's one of the newer targeted treatments for generalized myasthenia gravis (gMG), and your neurologist recommending it suggests your current treatment may need a boost.

Ultomiris works by targeting the complement system — part of your immune system that Show Full Answer

Quite a few MGteam members have discussed Ultomiris (ravulizumab)! It's one of the newer targeted treatments for generalized myasthenia gravis (gMG), and your neurologist recommending it suggests your current treatment may need a boost.

Ultomiris works by targeting the complement system — part of your immune system that, in MG, mistakenly attacks the connection between your nerves and muscles. Here are some things worth knowing before starting Ultomiris:

- It's given as an IV infusion, meaning you'll receive it at a clinic or hospital
- Infusions are typically given on a monthly or less frequent schedule
- Common side effects can include headaches, diarrhea, and increased risk of infection
- Because it affects your immune system, you may be more vulnerable to getting sick

It's really important to let your neurology team know about any new or worsening symptoms, especially ones that affect your daily life. Your antibody status (AChR or MuSK positive) may also play a role in whether Ultomiris is the right fit for you, so that's a great conversation to have with your neurologist if you haven't already.

Don't hesitate to ask your doctor about what results to expect and how long it might take to notice a difference — it can take some time to find the right treatment rhythm. 💪

September 7
A MGteam Member

After 2 days I could not even get off the couch. Very lethargic. Muscle weakness, very clouded thoughts. Called neurologist explained systems was told to stop. Cellcept is a cancer and anti rejection drug that I think the drug companies just tacked mg on for fun of it.

4 days ago
A MGteam Member

Jay what was your side effects of cell cept? I am short winded and feel like I am short of breath when I do things that are not even straining. Also feel a thickness in my throat. Not sure if the cell cept causes this.

4 days ago
A MGteam Member

Dear Jennifer, I sure hope you can find a doctor who can help to diagnose what is happening to you with all those symptoms.
It sounds painful. Im so sorry. Does your neurologist have answers.
Keep searching for answers.
God Bless you 🙏

4 days ago

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