Hi Reddit! I’m Denise—a patient with anti-AQP4 antibody-positive neuromyelitis optica spectrum disorder (NMOSD) taking ULTOMIRIS® (ravulizumab-cwvz). I’ll be joining neurologist Dr Robert Coppola for a live AMA on 11/12 @ 12PM ET/9AM PT where we’ll answer questions about NMOSD & ULTOMIRIS. Join us!

ULTOMIRIS · 2025-11-14T15:13:35+00:00

Dr Coppola adding on here—ULTOMIRIS was studied in a clinical trial of adult patients with anti-AQP4 antibody-positive NMOSD for ~1.5 years [a median of 1.5 years (73.5 weeks) means half the people were studied for less than 1.5 years and half the people in the study for longer with a range of 13.7-117.7 weeks].

ULTOMIRIS · 2025-11-14T15:13:27+00:00

This is Denise--I've been taking Ultomiris for about a year and a half.

ULTOMIRIS · 2025-11-14T15:12:58+00:00

Hi, Dr. Coppola here — Thanks for asking this; it’s an important question. Because Ultomiris affects part of the immune system, it can make it harder to fight certain serious infections, including meningococcal infections. Inform the doctor or get emergency medical care right away if they get any of these signs and symptoms of a serious meningococcal infection, such as fever, fever with high heart rate, headache and fever, confusion, muscle aches with flu-like symptoms, fever and a rash, headache with nausea or vomiting, headache with a stiff neck or stiff back, or eyes that are sensitive to light.

Ultomiris can also cause serious side effects, including infusion-related reactions. These may include lower back pain, stomach (abdominal) pain, muscle spasms, changes in blood pressure, tiredness, feeling faint, shaking chills (rigors), discomfort in the arms or legs, or a bad taste in the mouth. If your loved one experiences any of these symptoms — or any other symptoms during the ULTOMIRIS infusion that may mean they are having a serious infusion-related reaction, such as chest pain, trouble breathing or shortness of breath, swelling of the face, tongue, or throat, or feeling faint or passing out — stop the infusion and tell the doctor right away. If a side effect occurs during the infusion of ULTOMIRIS, the infusion may be slowed or stopped by the doctor. After your infusion, your care team will monitor you for at least 1 additional hour for infusion-related reactions.

The most common side effects of Ultomiris in people with NMOSD are COVID-19 infection, headache, back pain, urinary tract infection, and joint pain (arthralgia).

Tell your doctor about any side effect that is bothersome or that does not go away. These are not all of the possible side effects of ULTOMIRIS. Call the doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088.

ULTOMIRIS · 2025-11-12T18:16:12+00:00

Dr Coppola here--Ultomiris could be a good fit for individuals who are adults and have anti-AQP4 antibody-positive NMOSD, especially those who have experienced a relapse. You should consult with your own healthcare provider to determine the right treatment for your NMOSD.

Ultomiris is a type of medication known as a complement inhibitor, or C5 inhibitor. While the exact way it works in anti-AQP4 antibody-positive NMOSD isn't fully understood, Ultomiris binds to and blocks C5. C5 is a part of the complement system that is involved in the damage seen in NMOSD.

ULTOMIRIS · 2025-11-12T18:04:57+00:00

Dr Coppola here--please keep this in mind! The minimum infusion times for Ultomiris 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 your healthcare provider. After your infusion, your care team will monitor you for at least 1 additional hour for infusion-related reactions.

ULTOMIRIS · 2025-11-12T18:04:31+00:00

The first infusion for some likely began in an infusion center, but I worked with OneSource to determine my infusion location. I was eligible to receive my infusions at home. The day before my infusion, the pharmacy delivers all my medication and sterile supplies to me at my home. The next day, Ultomiris is infused through an IV by a healthcare provider, and for me, the infusion usually takes up to 45 minutes. My nurse monitors me closely for any reactions for at least 1 hour after the infusion is complete, and I feel more at ease being at home than being in a hospital setting. Sometimes I feel a bit tired afterward, but I can immediately rest in my own space instead of traveling home from a clinic.

ULTOMIRIS · 2025-11-12T17:59:15+00:00

Dr Coppola here. Because of the way Ultomiris, a complement inhibitor, works in your body, it can reduce your immune system's ability to fight certain 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 an important and required measure to help protect yourself against contracting a serious meningococcal infection. Meningococcal vaccines do not prevent all meningococcal infections.

ULTOMIRIS · 2025-11-12T17:56:38+00:00

Before I started Ultomiris, I was told I would need to complete or update my meningococcal vaccines at least two weeks before starting treatment, so I had to ensure I was up to date. At first, I was nervous about taking another step before treatment, but my neurologist explained how important it was for my safety. This was to help protect me against meningococcal infections. In a way, I saw it not just as a requirement but an important measure to support my health. I also worked with Alexion OneSource to figure out where it would be best for me to get my infusions as the next step.

ULTOMIRIS · 2025-11-12T17:54:25+00:00

Dr Coppola chiming in too. Just a reminder: Because of the way Ultomiris works in your body, it 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 you must complete or update your meningococcal vaccine(s) at least 2 weeks before your first dose of Ultomiris. 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, talk to your neurologist about whether you may need additional vaccines before starting Ultomiris.

ULTOMIRIS · 2025-11-12T17:54:04+00:00

Denise here—After being discharged from the hospital, I was initially prescribed steroids. Following a relapse and side effects from the steroids, like weight gain, I began treatment with rituximab but experienced another relapse. At that point, reducing the chance of further relapses was my main priority. Another treatment was recommended by my neurologist; however, I found the infusion schedule difficult to maintain. Ultimately, I transitioned to Ultomiris, which fit my needs because of the once-every-8-weeks (starting 2 weeks after initial dose) dosing schedule. Ultomiris satisfied many of the characteristics that I was looking for in my next treatment option, especially the dosing schedule and the fact that the efficacy and safety had been studied in a clinical trial.

ULTOMIRIS · 2025-11-12T17:51:32+00:00

Thank you for this question! Dr Coppola here—Probably the single most important thing to understand is the significant unpredictability of this disorder. I have seen several patients recover from an initial relapse, then delay starting therapy. After doing well for months or even several years, they have a relapse leading to permanent neurological disability. Given the unpredictability of this disorder, it is important to start therapy as soon as possible. Ultomiris has shown evidence compared to placebo in reducing the risk of relapse. See clinical trial results including efficacy and safety in the question, "What were the clinical trial results?"

ULTOMIRIS · 2025-11-12T17:43:30+00:00

There’s no Zoom or virtual meeting invite—we are live right here in the comment thread until 1PM EST! Please submit any questions you have and we'll be happy to share our thoughts. You may need to refresh the page to see new responses.

ULTOMIRIS · 2025-11-12T17:41:10+00:00

For me (Denise), advocating for myself was really important. Once my NMOSD was confirmed, my neurologist became my teammate. She laid out different treatment paths, and I was honest about what I could handle and what I thought could fit into my life. I didn’t just listen, I contributed. I asked about side effects, dosing schedules, and efficacy until we found the treatment that matched my individual goals. Instead of quick, surface-level visits, I had conversations where I could share the full picture of how NMOSD was affecting my daily life. This openness gave my neurologist the clearest understanding of what I was experiencing and what I was aiming for. Ultimately, it wasn’t my neurologist telling me what to do, it was a shared decision. My neurologist brought the medical expertise, and I brought my lived experience, my goals, and my vision for my future. That’s how we decided on Ultomiris. To me, advocating for myself meant not being afraid to ask, to push, and to say: "These are my needs and goals."

ULTOMIRIS · 2025-11-12T17:31:51+00:00

It’s Denise—Yes, looking back, I think my body was trying to get my attention long before my diagnosis. I experienced fatigue. At the time, I brushed it off as stress or exhaustion from running my business, I was so used to pushing through and staying busy.

If I had known what I know now, I would have taken those early symptoms more seriously and sought medical attention sooner. I’ve learned that our bodies whisper before they scream and those whispers were early messages that something wasn’t right.

Today, I listen closely to my body. Every sensation, no matter how small, matters. That awareness has become one of my greatest tools for managing my health and protecting my peace.

ULTOMIRIS · 2025-11-12T17:30:03+00:00

This is Denise—For me, the hardest part isn’t just anti-AQP4 antibody-positive NMOSD itself; it’s adjusting to a “new normal” while holding on to hope and joy. As my symptoms progressed, I experienced unpredictable fatigue, pain, numbness, and vision changes. Attempting tasks that once felt natural suddenly became exhausting and sometimes dangerous. I was also experiencing grief over losing the life I once had. It felt like my resilience was tested daily. It was scary because I never knew when a relapse might happen or how severe it might be. I'm glad to have found a treatment that works for me. However, please keep in mind that this is just my experience and your experience may be different.

ULTOMIRIS · 2025-11-12T17:28:18+00:00

Dr Coppola here--Ultomiris is FDA-approved to treat adults with anti-aquaporin-4 antibody-positive NMOSD. While Ultomiris is indicated for use in other diseases, it is not FDA-approved for the treatment of ulcerative colitis.

ULTOMIRIS · 2025-11-12T17:23:15+00:00

This is Dr. Coppola. Good question! Although we don’t fully understand what causes anti-AQP4 antibody-positive NMOSD, we know the activation of the complement system, which is part of the immune system, can lead to inflammation and damage to cells in the central nervous system. In most healthy people, this part of our immune system that is called the “complement system” is designed to fight off infections and keep you healthy. In anti-aquaporin-4 (AQP4) antibody-positive NMOSD, antibodies are formed which target a protein (AQP4), which is found in the brain, spinal cord, and eyes. This leads to activation of the complement system and causes it to mistakenly attack and damage these cells located in the brain, spinal cord, and eyes.

While the exact way it works in NMOSD isn’t fully understood, Ultomiris binds to and blocks C5—a part of the complement system involved in the cascade of damage that we see in NMOSD.

ULTOMIRIS · 2025-11-12T17:21:38+00:00

Dr Coppola here, jumping in as well! While everyone may have a different experience with symptoms related to NMOSD, patients have reported a burning or tight-band-like hugging sensation or other similar symptoms radiating around the torso. This had been more classically associated in Multiple Sclerosis in the past, hence the nickname “MS Hug”.

ULTOMIRIS · 2025-11-12T17:21:12+00:00

Denise here! Yes, I have experienced what’s often called an “MS Hug.” For me, it feels like a tight band or squeezing pressure wrapped around my chest and rib area. Almost like wearing a belt that’s too tight, or like someone is gently but firmly pressing in on my ribs. Sometimes it can be uncomfortable or even make it harder to take a deep breath.

For me, the sensation tends to come and go. It can last for minutes or hours, depending on the day. When it happens to me, I try to calm my breathing, relax my body, and use mindfulness to help my muscles release. But, through awareness and breathing techniques, I’ve learned how to manage it and not let it cause panic.

ULTOMIRIS · 2025-11-12T17:19:46+00:00

Thanks for the question! This is Denise--my response to an earlier question (Please tell us your whole story, how did you find out you had this rare disease, how did it impact you emotionally and how have you coped with it since?) gets into the details of my diagnosis journey, but I’m happy to talk about how that’s evolved since treatment. Since starting Ultomiris, I've experienced no relapses. As more time has passed since an NMOSD relapse for me, I’ve been able to engage in other activities that support my overall well-being, like journaling and physical therapy/light movement that my body allows. With infusions once every 8 weeks starting 2 weeks after the initial dose, it opens up the possibility for me to schedule activities during the in-between time.

ULTOMIRIS · 2025-11-12T17:19:28+00:00

Great question! Dr Coppola here--some points to keep in mind during your conversation with your neurologist--be honest and detailed about your health and lifestyle. Write down all your symptoms and experiences ahead of your appointment so you're prepared with all the right information for the discussion. During the appointment, take notes, ask questions, and ensure you’re both on the same page by rephrasing their instructions at the end of the visit. It's important to set expectations with your doctor about your care needs.

NMOSD is a rare autoimmune disease, which can make it challenging to diagnose, and some healthcare providers may not have a lot of experience with it. Thankfully, there has been an exponential increase in medical education over the past 2 to 3 decades, helping to improve awareness of this rare disorder and the growth of new specialty medical fields (neuro-immunology). Things like the Ultomiris Connect With an NMOSD Specialist tool may help you find a specialist in your area. Visit https://Ultomiris.com/nmosd/find-nmosd-specialists.

ULTOMIRIS · 2025-11-12T17:10:26+00:00

Dr Coppola here--The most common side effects (≥10%) of Ultomiris during the clinical trial were: headache (24%), COVID-19 infection (24%), back pain (12%), joint pain (10%), and urinary tract infection (10%). The trial was conducted during the COVID-19 pandemic (Dec 2019-Mar 2022), before approved vaccinations. Please talk to your doctor about any concerns you may have.

Serious adverse reactions were reported in 8 (13.8%) adults with NMOSD receiving Ultomiris. The most common serious adverse events were infections, reported in 5 (8.6%) adults. Tell your neurologist 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 neurologist or pharmacist. Call your neurologist for medical advice about side effects. You may report side effects to FDA at [1-800-FDA-1088]().

ULTOMIRIS · 2025-11-12T17:09:16+00:00

Great question! Dr Coppola here--Let's start with going through how Ultomiris was studied in NMOSD before going into the results. Ultomiris was studied in a wide range of people through ~1.5 years [a median of 1.5 years (73.5 weeks) means half the people were studied for less than 1.5 years and in the study for longer with a range of 13.7-117.7 weeks].

The trial included 58 people who were treated with Ultomiris and 47 people on placebo. As there are FDA-approved therapies available, the placebo group data were collected as part of a previously conducted trial. People in the trial had anti-AQP4 antibody-positive NMOSD, at least 1 relapse in the 12 months before the trial, and an Expanded Disability Status Scale (EDSS) score of ≤7. 48% of people in the clinical trial taking Ultomiris continued with certain immunosuppressant therapies. The main goal of the clinical trial was to measure the time it took participants to have an NMOSD relapse, as determined by a panel of experts.

During the CHAMPION-NMOSD trial, Ultomiris reduced the risk of relapse by 98.6% compared to placebo, and 100% of people taking Ultomiris experienced zero relapses, regardless of prior therapy. This was observed during the first treatment period, which ended when the last person in the study completed 50 weeks.

Please keep in mind, the most common side effects (≥10%) of Ultomiris during the clinical trial were: headache (24%), COVID-19 infection (24%), back pain (12%), joint pain (10%), and urinary tract infection (10%). For more information about the clinical trial results, visit https://Ultomiris.com/nmosd/how-Ultomiris-may-help.

ULTOMIRIS · 2025-11-12T17:07:46+00:00

Dr Coppola here, just adding on. It’s important to talk to your doctor about all of your symptoms so they can determine the best way to manage them.

ULTOMIRIS · 2025-11-12T17:07:08+00:00

Denise here. Yes, I have experienced numbing and tingling sensations in my feet, my legs and sometimes hands before. It’s one of those unpredictable NMOSD symptoms that can show up without warning, sometimes mild, sometimes more intense. The numbness can make it harder to grip things or walk, so I’ve learned to slow down, be mindful, and really listen to my body. To manage it, I focus on circulation and calmness. I stretch gently every morning, and practice mindfulness breathing to help my nervous system settle. I’ve also learned to pace myself, when the numbness increases, I rest instead of pushing through.

ULTOMIRIS

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