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Esther, an NMOSD patient

Esther
UPLIZNA patient since 2021.
Individual results may vary.

Esther, an NMOSD patient

Esther
UPLIZNA patient since 2021.
Individual results may vary.

NMOSD Patient Stories

In this video series, real patients with neuromyelitis optica spectrum disorder (NMOSD) tell the story of their diagnosis, treatment journey, and the struggles they endured along the way.

Learn how UPLIZNA has helped patients with this debilitating disease.

Individual results may vary. Please listen to the Important Safety Information at the end of each video.

Esther's living with NMOSD patient story thumbnail
Transcript

Oh, gosh. Yes. That’s me. I’m sorry. I don’t even want to look at these pictures sometimes because it tells you exactly how I was feeling. Pain and unknown, fear. Damn you, NMOSD.

I’d just given birth to my daughter Amaya, and I started noticing some symptoms after giving birth. One of those was back pain, severe back pain. At this time now, I’ve already started visiting my PCP explaining my symptoms to her. Her explanation was maybe it’s just a normal postpartum pain and stress.

I started noticing changes in my motor skills. I have numbness and tingling in my hands and feet. I could barely control my bladder at this point. I went to the emergency room because I could barely walk without holding onto something. Went home, nothing was done, again, was dismissed.

And they finally did an AQP4 test, and it came back positive. We have a diagnosis.

The most important question was, “How will this impact my life? Will I have my normal life again?” “No, this will change your life forever.” So that breaks my heart, like, “Okay, where do we go from here? What is it going to be like not just for us, but for our kids?”

The reason why I picked UPLIZNA is the timing. It was once every 6 months after the first 2 initial dose[s]. So, that’s just a relief. It’s just convenient. Since my initial infusion treatment had been going really well for me, I always say, my infusion day is a time for me to celebrate my NMOSD diagnosis and my treatment.

I’m able to be a mom, I’m able to go for a walk, I’ve been able to return to my exercise classes. It’s a miracle that I’m standing here and be like, “I’ve not had a relapse.” I’m able to be present, be there for whatever, just be present, be there for my kids.

INDICATION

UPLIZNA (inebilizumab-cdon) is indicated for the treatment of neuromyelitis optica spectrum disorder (NMOSD) in adult patients who are anti-aquaporin-4 (AQP4) antibody positive.

IMPORTANT SAFETY INFORMATION

UPLIZNA is contraindicated in patients with:

  • A history of life-threatening infusion reaction to UPLIZNA
  • Active hepatitis B infection
  • Active or untreated latent tuberculosis

WARNINGS AND PRECAUTIONS

Infusion Reactions: UPLIZNA can cause infusion reactions, which can include headache, nausea, somnolence, dyspnea, fever, myalgia, rash, or other symptoms. Infusion reactions were most common with the first infusion but were also observed during subsequent infusions. Administer pre-medication with a corticosteroid, an antihistamine, and an anti-pyretic.

Infections: The most common infections reported by UPLIZNA-treated patients in the randomized and open-label periods included urinary tract infection (20%), nasopharyngitis (13%), upper respiratory tract infection (8%), and influenza (7%). Delay UPLIZNA administration in patients with an active infection until the infection is resolved.

Increased immunosuppressive effects are possible if combining UPLIZNA with another immunosuppressive therapy.

The risk of Hepatitis B Virus (HBV) reactivation has been observed with other B-cell-depleting antibodies. Perform HBV screening in all patients before initiation of treatment with UPLIZNA. Do not administer to patients with active hepatitis.

Although no confirmed cases of Progressive Multifocal Leukoencephalopathy (PML) were identified in UPLIZNA clinical trials, JC virus infection resulting in PML has been observed in patients treated with other B-cell-depleting antibodies and other therapies that affect immune competence. At the first sign or symptom suggestive of PML, withhold UPLIZNA and perform an appropriate diagnostic evaluation.

Patients should be evaluated for tuberculosis risk factors and tested for latent infection prior to initiating UPLIZNA.

Vaccination with live-attenuated or live vaccines is not recommended during treatment and after discontinuation, until B-cell repletion.

Reduction in Immunoglobulins: There may be a progressive and prolonged hypogammaglobulinemia or decline in the levels of total and individual immunoglobulins such as immunoglobulins G and M (IgG and IgM) with continued UPLIZNA treatment. Monitor the level of immunoglobulins at the beginning, during, and after discontinuation of treatment with UPLIZNA until B-cell repletion especially in patients with opportunistic or recurrent infections.

Fetal Risk: May cause fetal harm based on animal data. Advise females of reproductive potential of the potential risk to a fetus and to use an effective method of contraception during treatment and for 6 months after stopping UPLIZNA.

Adverse Reactions: The most common adverse reactions (at least 10% of patients treated with UPLIZNA and greater than placebo) were urinary tract infection and arthralgia.

Please see Full Prescribing Information for more information.

Esther: UPLIZNA Fits My Lifestyle

Esther highlights the urgency to recognize and act on NMOSD disease activity in a timely manner.

Michelle's living with NMOSD patient story thumbnail
Transcript

This was my last attack and I would not wish this upon anyone. It’s just weird to see these again, because it’s been so long. This is where I was at with this disease at one point. Feeling like there was no hope.

I am an instructor at a university teaching business and business communication. I also live on a farm with my husband and two daughters.

I woke up one morning. It was early October and my left eye, there was just a little bit of a fuzzy in it. I had never had that before so I decided I probably should go to the eye doctor and see what’s going on. They did a visual field test, and the eye doctor said, “Hey, this looks like optic neuritis. We’re going to send you to a neuro-ophthalmologist who specializes more in these issues.”

Then he did a blood test. A week or two later, I get the results, and that was probably the roughest day of my life. This test, the Aquaporin-4 a test says you are positive for NMOSD. And that my life would be pretty different from now on.

I start panicking because most things on the internet are still fairly outdated with NMOSD. It’ll say things like “five-year lifespan.” My vision might totally go away.

Horrifying disabilities. And so, I’m starting to read this thinking, “Do I only have five years left with my kids?”

About a week or two later that neuro-ophthalmologist did have me in his office and he said, we’re going to start with this and it was just a pill and so I took that treatment for about six months and had my next attack. And that attack was uncontrollable hiccups. They gave me some steroids to help calm down my system, and then two or three months later, back in the hospital with another relapse, and that time it was vertigo, actually. Constant spinning. It felt like my hands were somewhat paralyzed. I couldn’t move my thumbs to type and things like that. They do the MRIs and say you’re in the middle of a pretty bad attack. So, I stayed in the hospital a good week on that one.

Any time I’d have any symptom during that year, I swore I was having an attack, right? My eye would hurt a little and I’d be like oh, oh, my visions going to go. So that’s what’s really difficult with NMOSD. It’s always looming.

After having two relapses in just a year, my neuro-ophthalmologist said, “Okay, it’s not working.” And so, he actually sent me to another doctor, and that’s where I found out about UPLIZNA.

The twice-a-year treatment with UPLIZNA sold me on it. Because there are other treatments that are more frequent. As a busy mom, as a busy wife, as a busy worker, that completely sold me. My doctor walked me through all of the potential benefits and side effects, but for my experience, since I started UPLIZNA I have not had any infusion reactions or side effects.

What I’ve left behind after starting UPLIZNA are relapses. I have been relapse free since I started in October of 2021. UPLIZNA gave me back my life where I could work, teach, cook, be a wife, and spend time with my friends and family.

So, my advice to someone who’s recently been diagnosed with NMOSD is first, it’s ok to be sad. It’s ok to cry. But then you need to talk to your doctor and see all of the options that are out there available for you. Because there is life with NMOSD.

INDICATION

UPLIZNA (inebilizumab-cdon) is indicated for the treatment of neuromyelitis optica spectrum disorder (NMOSD) in adult patients who are anti-aquaporin-4 (AQP4) antibody positive.

IMPORTANT SAFETY INFORMATION

UPLIZNA is contraindicated in patients with:

  • A history of life-threatening infusion reaction to UPLIZNA
  • Active hepatitis B infection
  • Active or untreated latent tuberculosis

WARNINGS AND PRECAUTIONS

Infusion Reactions: UPLIZNA can cause infusion reactions, which can include headache, nausea, somnolence, dyspnea, fever, myalgia, rash, or other symptoms. Infusion reactions were most common with the first infusion but were also observed during subsequent infusions. Administer pre-medication with a corticosteroid, an antihistamine, and an anti-pyretic.

Infections: The most common infections reported by UPLIZNA-treated patients in the randomized and open-label periods included urinary tract infection (20%), nasopharyngitis (13%), upper respiratory tract infection (8%), and influenza (7%). Delay UPLIZNA administration in patients with an active infection until the infection is resolved.

Increased immunosuppressive effects are possible if combining UPLIZNA with another immunosuppressive therapy.

The risk of Hepatitis B Virus (HBV) reactivation has been observed with other B-cell-depleting antibodies. Perform HBV screening in all patients before initiation of treatment with UPLIZNA. Do not administer to patients with active hepatitis.

Although no confirmed cases of Progressive Multifocal Leukoencephalopathy (PML) were identified in UPLIZNA clinical trials, JC virus infection resulting in PML has been observed in patients treated with other B-cell-depleting antibodies and other therapies that affect immune competence. At the first sign or symptom suggestive of PML, withhold UPLIZNA and perform an appropriate diagnostic evaluation.

Patients should be evaluated for tuberculosis risk factors and tested for latent infection prior to initiating UPLIZNA.

Vaccination with live-attenuated or live vaccines is not recommended during treatment and after discontinuation, until B-cell repletion.

Reduction in Immunoglobulins: There may be a progressive and prolonged hypogammaglobulinemia or decline in the levels of total and individual immunoglobulins such as immunoglobulins G and M (IgG and IgM) with continued UPLIZNA treatment. Monitor the level of immunoglobulins at the beginning, during, and after discontinuation of treatment with UPLIZNA until B-cell repletion especially in patients with opportunistic or recurrent infections.

Fetal Risk: May cause fetal harm based on animal data. Advise females of reproductive potential of the potential risk to a fetus and to use an effective method of contraception during treatment and for 6 months after stopping UPLIZNA.

Adverse Reactions: The most common adverse reactions (at least 10% of patients treated with UPLIZNA and greater than placebo) were urinary tract infection and arthralgia.

Please see Full Prescribing Information for more information.

Michelle: UPLIZNA Helped Me Get Back to Some of the Things That Matter Most in My Life

Michelle highlights the importance of starting patients on appropriate treatment right away.

Betsy's living with NMOSD patient story thumbnail
Transcript

Toughest day of my life. It was shortly after I got home, not wanting to get up off the sofa, still not able to see right. A tough day. But I think I’m here to help people. Maybe that’s why I got sick.

In 2018 I had this sinus infection that just did not want to go anywhere. I ended up with this rash on my thighs that nobody could distinguish what it was.

Then, in December, I had woke up and I was dizzy.

And as the day progressed, I was getting dizzier and dizzier. Then, at one point, I was sitting down, and I just slowly slumped off to the side, and this huge white flash of light went off in my head.

We went to the emergency department. I was brought by ambulance, and that prompted them to do some testing. I had an MRI of the brain and I have lesions in the brain and lesions in the spine.

I was admitted to the ICU. They did lots and lots of testing all week long. It’s really scary when you don’t know what’s happening to you.

Having to leave the hospital, I was not able to utilize my left leg. I also left the hospital with a patch on my right eye because I was still seeing double. I had to allow others to help me. When you are that person who does all that for yourself and then that is just gone. That’s frustrating.

We opted to do the UPLIZNA, and that was one of the best decisions of my life.

Because UPLIZNA is humanized, my doctor and I felt that this would be a better fit.

We were told about the potential side effects, but every 6 months to have an infusion to help prevent any relapse fits right into what you need for your life, for my life, for my husband’s life.

Things have changed since UPLIZNA has entered my life. What I left behind is all those days I could not get out of bed. All those days filled with tears.

With UPLIZNA I don’t have that. I can actually cook dinner. I can do things around the house. I can work a full-time job.

My husband told my provider, If I was to describe myself nobody really would know the truth about what’s going on. Nobody would ever know that I was sick.

NMOSD will not define me. I will define it.

INDICATION

UPLIZNA (inebilizumab-cdon) is indicated for the treatment of neuromyelitis optica spectrum disorder (NMOSD) in adult patients who are anti-aquaporin-4 (AQP4) antibody positive.

IMPORTANT SAFETY INFORMATION

UPLIZNA is contraindicated in patients with:

  • A history of life-threatening infusion reaction to UPLIZNA
  • Active hepatitis B infection
  • Active or untreated latent tuberculosis

WARNINGS AND PRECAUTIONS

Infusion Reactions: UPLIZNA can cause infusion reactions, which can include headache, nausea, somnolence, dyspnea, fever, myalgia, rash, or other symptoms. Infusion reactions were most common with the first infusion but were also observed during subsequent infusions. Administer pre-medication with a corticosteroid, an antihistamine, and an anti-pyretic.

Infections: The most common infections reported by UPLIZNA-treated patients in the randomized and open-label periods included urinary tract infection (20%), nasopharyngitis (13%), upper respiratory tract infection (8%), and influenza (7%). Delay UPLIZNA administration in patients with an active infection until the infection is resolved.

Increased immunosuppressive effects are possible if combining UPLIZNA with another immunosuppressive therapy.

The risk of Hepatitis B Virus (HBV) reactivation has been observed with other B-cell-depleting antibodies. Perform HBV screening in all patients before initiation of treatment with UPLIZNA. Do not administer to patients with active hepatitis.

Although no confirmed cases of Progressive Multifocal Leukoencephalopathy (PML) were identified in UPLIZNA clinical trials, JC virus infection resulting in PML has been observed in patients treated with other B-cell-depleting antibodies and other therapies that affect immune competence. At the first sign or symptom suggestive of PML, withhold UPLIZNA and perform an appropriate diagnostic evaluation.

Patients should be evaluated for tuberculosis risk factors and tested for latent infection prior to initiating UPLIZNA.

Vaccination with live-attenuated or live vaccines is not recommended during treatment and after discontinuation, until B-cell repletion.

Reduction in Immunoglobulins: There may be a progressive and prolonged hypogammaglobulinemia or decline in the levels of total and individual immunoglobulins such as immunoglobulins G and M (IgG and IgM) with continued UPLIZNA treatment. Monitor the level of immunoglobulins at the beginning, during, and after discontinuation of treatment with UPLIZNA until B-cell repletion especially in patients with opportunistic or recurrent infections.

Fetal Risk: May cause fetal harm based on animal data. Advise females of reproductive potential of the potential risk to a fetus and to use an effective method of contraception during treatment and for 6 months after stopping UPLIZNA.

Adverse Reactions: The most common adverse reactions (at least 10% of patients treated with UPLIZNA and greater than placebo) were urinary tract infection and arthralgia.

Please see Full Prescribing Information for more information.

Betsy: UPLIZNA Has Made a Difference in My Life

Betsy highlights why she felt the dosing schedule with UPLIZNA was right for her.

Jasmine's living with NMOSD patient story thumbnail
Transcript

I’m from Denver, Colorado and I work in healthcare. I started working in healthcare because I like just helping people and l ended up in neurology, working with, like, rare diseases or just autoimmune conditions.

In January 2021 I was in school, for nurse for getting all my prereqs for nursing and I woke up and I had haziness in the left eye, some pain. Then by day 2, it was more hazy vision, more pain. Then by the third day, I was driving into work, and got in the parking lot, and then my vision just went out.

I was definitely scared. You play it in your mind, like, I just need to rest more.

But the doctors that I worked with, when they noticed I was experiencing optic neuritis, I was admitted to the hospital for 3 days for steroids and then from being admitted it was just, all the tests were ran. The MRIs they sent me for. Lab work. Spinal tap.

That Monday, we had all the testing back that was reflective of an MS diagnosis. And then later on the aquaporin-4 lab result came back and then I got the diagnosis of NMOSD.
I’ve heard of NMOSD a few times. We’ve had maybe a handful of patients that have NMOSD. In my mind, I was just thinking, “When will this happen to me?” and comparing myself to other patients that I’ve seen. Feeling like, “Will I ever go back to work the same? Will I ever go back to school? How does my life look now?” I have so much other stuff I have to do. That was probably the hardest part.

I worked with a doctor who knew a lot of information about NMOSD. The doctor was like, “This is probably the best time for you to be getting diagnosed because there are treatments there and now we need to figure out which treatment is going to be best for you.”
I feel like every time I get an infusion, I’m feeling a little bit more like myself.
I’m almost 3 years diagnosed. I feel really good. I feel really confident in what I’m able to do.
What I left behind with UPLIZNA is the hospital stays.
Before I felt like, will I ever be able to go back to school, will I ever be able to go on trips with my friends and family. And now I’m like… I can do those things.

After getting diagnosed, it taught me how to push more for patients who are nervous to speak up for themselves, but then also like put the energy back into myself and know that I can do these things, whatever I want to do.

INDICATION

UPLIZNA (inebilizumab-cdon) is indicated for the treatment of neuromyelitis optica spectrum disorder (NMOSD) in adult patients who are anti-aquaporin-4 (AQP4) antibody positive.

IMPORTANT SAFETY INFORMATION

UPLIZNA is contraindicated in patients with:

  • A history of life-threatening infusion reaction to UPLIZNA
  • Active hepatitis B infection
  • Active or untreated latent tuberculosis

WARNINGS AND PRECAUTIONS

Infusion Reactions: UPLIZNA can cause infusion reactions, which can include headache, nausea, somnolence, dyspnea, fever, myalgia, rash, or other symptoms. Infusion reactions were most common with the first infusion but were also observed during subsequent infusions. Administer pre-medication with a corticosteroid, an antihistamine, and an anti-pyretic.

Infections: The most common infections reported by UPLIZNA-treated patients in the randomized and open-label periods included urinary tract infection (20%), nasopharyngitis (13%), upper respiratory tract infection (8%), and influenza (7%). Delay UPLIZNA administration in patients with an active infection until the infection is resolved.

Increased immunosuppressive effects are possible if combining UPLIZNA with another immunosuppressive therapy.

The risk of Hepatitis B Virus (HBV) reactivation has been observed with other B-cell-depleting antibodies. Perform HBV screening in all patients before initiation of treatment with UPLIZNA. Do not administer to patients with active hepatitis.

Although no confirmed cases of Progressive Multifocal Leukoencephalopathy (PML) were identified in UPLIZNA clinical trials, JC virus infection resulting in PML has been observed in patients treated with other B-cell-depleting antibodies and other therapies that affect immune competence. At the first sign or symptom suggestive of PML, withhold UPLIZNA and perform an appropriate diagnostic evaluation.

Patients should be evaluated for tuberculosis risk factors and tested for latent infection prior to initiating UPLIZNA.

Vaccination with live-attenuated or live vaccines is not recommended during treatment and after discontinuation, until B-cell repletion.

Reduction in Immunoglobulins: There may be a progressive and prolonged hypogammaglobulinemia or decline in the levels of total and individual immunoglobulins such as immunoglobulins G and M (IgG and IgM) with continued UPLIZNA treatment. Monitor the level of immunoglobulins at the beginning, during, and after discontinuation of treatment with UPLIZNA until B-cell repletion especially in patients with opportunistic or recurrent infections.

Fetal Risk: May cause fetal harm based on animal data. Advise females of reproductive potential of the potential risk to a fetus and to use an effective method of contraception during treatment and for 6 months after stopping UPLIZNA.

Adverse Reactions: The most common adverse reactions (at least 10% of patients treated with UPLIZNA and greater than placebo) were urinary tract infection and arthralgia.

Please see Full Prescribing Information for more information.

Jasmine: Feeling a Little Bit More Like Myself After Each Infusion

Jasmine discusses the importance of testing for AQP4-IgG.

Carla's living with NMOSD patient story thumbnail
Transcript

There has been a time when I didn’t have a smile on my face when I was going through treatments. It’s very important that I remember moments like that, what I have gone through until where I am now, because it just motivates me to just keep living, keep experiencing life the way I should be experiencing it despite being diagnosed with NMOSD.

I started being very tired a lot, not being able to do some of the things around the house, and the children noticed that I was getting distant. I stayed in the bed a lot. They knew that some things were changing. I started noticing that I had this pinched nerve in my neck that was excruciating pain.
I didn’t quite understand if the symptoms were just lingering around for a little while or were there going to be permanent. At one point, I was in a wheelchair, and I’m suffering from paralysis on the left side and I can’t use my left hand. “Will I ever be able to get out of the wheelchair?” This is serious. This is scary.

I went through a series of doctors and different doctors was telling me different things. It was the second neurologist that I had to go visit. He ran the aquaporin-4 test, and I showed up positive. He told me that I had NMOSD.

Years had passed before I knew it was NMOSD. What scared me is that I really didn’t know if I was going to be able to continue to be working and providing for the family.

I was young, so I was just feeling like, “What is going to happen to my body?” I was just waiting to hear from the doctors or what to expect because I don’t have an idea. Would this last for months, would this last for years, or would this last for a lifetime? You don’t know what to think or imagine. You’re just waiting for answers.

I went through rehab, and as I went from a wheelchair to a pushing walker to a walking cane until I was actually able to actually just walk on my own. So, I started believing in myself that even though I’m going through this condition, these symptoms are going to get better.

After the diagnosis, that’s when I go, and after that, I have 2 more different relapses, where I’m actually hospitalized. I was on a treatment, but it wasn’t helping with the NMOSD at the time. Every 3 to 4 months, I’ll find myself hospitalized.

The neurologist at the time that was treating me, he realized that I probably need to go see someone else that actually just specialized in NMOSD. That’s when I went to my current neurologist, and he told me about UPLIZNA.

What I left behind after starting UPLIZNA is the fear of hospitalizations.
Looking at my overall health from the first time I started UPLIZNA, I haven’t had any attacks. I haven’t had any hospitalizations. What it does for me is that it gives me that reassurance that I could do some of the things that I used to enjoy before I was diagnosed. You still can go out with your friends. You still can work. You still can have a family. I see myself as someone that is strong, won’t settle for anything. I see myself as someone that believes that no matter what you’re going through, things can get better. It gives me an assurance that I can move on and live my life.

INDICATION

UPLIZNA (inebilizumab-cdon) is indicated for the treatment of neuromyelitis optica spectrum disorder (NMOSD) in adult patients who are anti-aquaporin-4 (AQP4) antibody positive.

IMPORTANT SAFETY INFORMATION

UPLIZNA is contraindicated in patients with:

  • A history of life-threatening infusion reaction to UPLIZNA
  • Active hepatitis B infection
  • Active or untreated latent tuberculosis

WARNINGS AND PRECAUTIONS

Infusion Reactions: UPLIZNA can cause infusion reactions, which can include headache, nausea, somnolence, dyspnea, fever, myalgia, rash, or other symptoms. Infusion reactions were most common with the first infusion but were also observed during subsequent infusions. Administer pre-medication with a corticosteroid, an antihistamine, and an anti-pyretic.

Infections: The most common infections reported by UPLIZNA-treated patients in the randomized and open-label periods included urinary tract infection (20%), nasopharyngitis (13%), upper respiratory tract infection (8%), and influenza (7%). Delay UPLIZNA administration in patients with an active infection until the infection is resolved.

Increased immunosuppressive effects are possible if combining UPLIZNA with another immunosuppressive therapy.

The risk of Hepatitis B Virus (HBV) reactivation has been observed with other B-cell-depleting antibodies. Perform HBV screening in all patients before initiation of treatment with UPLIZNA. Do not administer to patients with active hepatitis.

Although no confirmed cases of Progressive Multifocal Leukoencephalopathy (PML) were identified in UPLIZNA clinical trials, JC virus infection resulting in PML has been observed in patients treated with other B-cell-depleting antibodies and other therapies that affect immune competence. At the first sign or symptom suggestive of PML, withhold UPLIZNA and perform an appropriate diagnostic evaluation.

Patients should be evaluated for tuberculosis risk factors and tested for latent infection prior to initiating UPLIZNA.

Vaccination with live-attenuated or live vaccines is not recommended during treatment and after discontinuation, until B-cell repletion.

Reduction in Immunoglobulins: There may be a progressive and prolonged hypogammaglobulinemia or decline in the levels of total and individual immunoglobulins such as immunoglobulins G and M (IgG and IgM) with continued UPLIZNA treatment. Monitor the level of immunoglobulins at the beginning, during, and after discontinuation of treatment with UPLIZNA until B-cell repletion especially in patients with opportunistic or recurrent infections.

Fetal Risk: May cause fetal harm based on animal data. Advise females of reproductive potential of the potential risk to a fetus and to use an effective method of contraception during treatment and for 6 months after stopping UPLIZNA.

Adverse Reactions: The most common adverse reactions (at least 10% of patients treated with UPLIZNA and greater than placebo) were urinary tract infection and arthralgia.

Please see Full Prescribing Information for more information.

Carla: Never Doubt Your Own Strength

Carla stresses the importance of referring patients to NMOSD specialists for proper treatment.

Panga's living with NMOSD patient story thumbnail
Transcript

Even with being diagnosed and having what I have, I really don’t give up on myself. I’m not a type of person, I always say I love Panga, and so I’m not going to give up on me. Anything that I can do, for me, that’s what I do.

In 2015, I started noticing a tingling feeling in the bottom of my feet. I ignored it because I thought always it contributed to my shoes.

2016, I was working doing karaoke, and for some reason or another that tingling and all the sensation in their neck got a little bit worse. That night, it was excruciating.

I had a bad experience that night that they took me to the hospital. In the waiting room where I was, the man came in that had on a lab coat. He came in and as soon as he hit the door, came into the door and he looked at me and what he said to me was, “Well, I can tell you right now, all I see is fat.” And so, I just cried.

They just gave me 3 pain medications; they sent me home. And the next morning I’m thinking I’m good because I didn’t feel anything. I got ready to get out of the bed, and I went straight to the floor because I had no feelings from my stomach down to my feet. I called someone, they sent the ambulance over and took me to the hospital.

After 7 days of being in the hospital, the doctor had them run tests and he said, I had transverse myelitis.

They sent therapists in to start trying to see if I could get up and walk. After doing that with them, they decided I probably needed to go to the rehab hospital just for the therapy. That was a 28-day process of just teaching me how to walk again.

That day was very scary for me because I’d never heard of that. I went to YouTube and when I saw the people that were diagnosed with that, I just broke down because I thought, “Oh my God, I’m never going to be the same again and this paralysis could happen to me anytime.” That was what was going through my mind. I went through that for 3 years.

Since starting UPLIZNA, I haven’t had any relapses. I’ve gained a lot of belief and strength in myself. It’s a blessing.

I would say that Panga is almost back to her normal self. I’m not afraid to do things that I used to do, because I do have mobility. I like to do karaoke. And I sing professionally. Those are the things that give me joy.

The only thing that’s changed is that I have NMOSD. So, it hasn’t stopped me from doing things that I love to do. And I’m going to stay hopeful for that.

INDICATION

UPLIZNA (inebilizumab-cdon) is indicated for the treatment of neuromyelitis optica spectrum disorder (NMOSD) in adult patients who are anti-aquaporin-4 (AQP4) antibody positive.

IMPORTANT SAFETY INFORMATION

UPLIZNA is contraindicated in patients with:

  • A history of life-threatening infusion reaction to UPLIZNA
  • Active hepatitis B infection
  • Active or untreated latent tuberculosis

WARNINGS AND PRECAUTIONS

Infusion Reactions: UPLIZNA can cause infusion reactions, which can include headache, nausea, somnolence, dyspnea, fever, myalgia, rash, or other symptoms. Infusion reactions were most common with the first infusion but were also observed during subsequent infusions. Administer pre-medication with a corticosteroid, an antihistamine, and an anti-pyretic.

Infections: The most common infections reported by UPLIZNA-treated patients in the randomized and open-label periods included urinary tract infection (20%), nasopharyngitis (13%), upper respiratory tract infection (8%), and influenza (7%). Delay UPLIZNA administration in patients with an active infection until the infection is resolved.

Increased immunosuppressive effects are possible if combining UPLIZNA with another immunosuppressive therapy.

The risk of Hepatitis B Virus (HBV) reactivation has been observed with other B-cell-depleting antibodies. Perform HBV screening in all patients before initiation of treatment with UPLIZNA. Do not administer to patients with active hepatitis.

Although no confirmed cases of Progressive Multifocal Leukoencephalopathy (PML) were identified in UPLIZNA clinical trials, JC virus infection resulting in PML has been observed in patients treated with other B-cell-depleting antibodies and other therapies that affect immune competence. At the first sign or symptom suggestive of PML, withhold UPLIZNA and perform an appropriate diagnostic evaluation.

Patients should be evaluated for tuberculosis risk factors and tested for latent infection prior to initiating UPLIZNA.

Vaccination with live-attenuated or live vaccines is not recommended during treatment and after discontinuation, until B-cell repletion.

Reduction in Immunoglobulins: There may be a progressive and prolonged hypogammaglobulinemia or decline in the levels of total and individual immunoglobulins such as immunoglobulins G and M (IgG and IgM) with continued UPLIZNA treatment. Monitor the level of immunoglobulins at the beginning, during, and after discontinuation of treatment with UPLIZNA until B-cell repletion especially in patients with opportunistic or recurrent infections.

Fetal Risk: May cause fetal harm based on animal data. Advise females of reproductive potential of the potential risk to a fetus and to use an effective method of contraception during treatment and for 6 months after stopping UPLIZNA.

Adverse Reactions: The most common adverse reactions (at least 10% of patients treated with UPLIZNA and greater than placebo) were urinary tract infection and arthralgia.

Please see Full Prescribing Information for more information.

Panga: Getting Back to Some of the Things I Love

Panga emphasizes the need for urgency to recognize and act on NMOSD disease activity.

Why UPLIZNA?

Explore the mechanism of action and glycoengineered design of UPLIZNA.

UPLIZNA Mechanism of Action

UPLIZNA mechanism of action
Transcript

UPLIZNA is an immunoglobulin G1, or IgG1, monoclonal antibody that is humanized, afucosylated, and binds specifically to CD19 for efficient B-cell depletion.

While the precise mechanism by which inebilizumab-cdon exerts its therapeutic effects is unknown, preclinical and clinical evidence of B-cell depletion suggest potential activity in aquaporin-4–positive neuromyelitis optica spectrum disorder, or NMOSD.

CD19 is present on pre-B cells, mature B cells, plasmablasts, and some plasma cells that contribute to NMOSD’s multimechanistic pathology through autoantibody production, cytokine/chemokine secretion, antigen presentation, and T-cell interactions.

UPLIZNA bound to CD19 surface antigen enables antibody-dependent cellular cytolysis, ADCC, that lowered peripheral B-cell counts after 8 days, and allowed 100% of patients to experience B-cell reductions below the lower limit of normal by 4 weeks.

The engineering of UPLIZNA contributes to its differentiated mechanistic and clinical profile, efficient depletion of CD19-positive B cells through enhanced ADCC, low rates of drug-drug interactions, low rates of anti-drug antibody generation, low rates of infusion reactions, 6-month maintenance dosing, and depletion of the spectrum of CD19-positive B cells that activate autoimmune and inflammatory disease mechanisms.

UPLIZNA is FDA approved for use in adults with AQP4-antibody–positive NMOSD.

INDICATION AND IMPORTANT SAFETY INFORMATION

INDICATION

UPLIZNA (inebilizumab-cdon) is indicated for the treatment of neuromyelitis optica spectrum disorder (NMOSD) in adult patients who are anti-aquaporin-4 (AQP4) antibody positive.

IMPORTANT SAFETY INFORMATION

UPLIZNA is contraindicated in patients with:

  • A history of life-threatening infusion reaction to UPLIZNA
  • Active hepatitis B infection
  • Active or untreated latent tuberculosis

WARNINGS AND PRECAUTIONS

Infusion Reactions: UPLIZNA can cause infusion reactions, which can include headache, nausea, somnolence, dyspnea, fever, myalgia, rash, or other symptoms. Infusion reactions were most common with the first infusion but were also observed during subsequent infusions. Administer pre-medication with a corticosteroid, an antihistamine, and an anti-pyretic.

Infections: The most common infections reported by UPLIZNA-treated patients in the randomized and open-label periods included urinary tract infection (20%), nasopharyngitis (13%), upper respiratory tract infection (8%), and influenza (7%). Delay UPLIZNA administration in patients with an active infection until the infection is resolved.

Increased immunosuppressive effects are possible if combining UPLIZNA with another immunosuppressive therapy.

The risk of Hepatitis B Virus (HBV) reactivation has been observed with other B-cell-depleting antibodies. Perform HBV screening in all patients before initiation of treatment with UPLIZNA. Do not administer to patients with active hepatitis.

Although no confirmed cases of Progressive Multifocal Leukoencephalopathy (PML) were identified in UPLIZNA clinical trials, JC virus infection resulting in PML has been observed in patients treated with other B-cell-depleting antibodies and other therapies that affect immune competence. At the first sign or symptom suggestive of PML, withhold UPLIZNA and perform an appropriate diagnostic evaluation.

Patients should be evaluated for tuberculosis risk factors and tested for latent infection prior to initiating UPLIZNA.

Vaccination with live-attenuated or live vaccines is not recommended during treatment and after discontinuation, until B-cell repletion.

Reduction in Immunoglobulins: There may be a progressive and prolonged hypogammaglobulinemia or decline in the levels of total and individual immunoglobulins such as immunoglobulins G and M (IgG and IgM) with continued UPLIZNA treatment. Monitor the level of immunoglobulins at the beginning, during, and after discontinuation of treatment with UPLIZNA until B-cell repletion especially in patients with opportunistic or recurrent infections.

Fetal Risk: May cause fetal harm based on animal data. Advise females of reproductive potential of the potential risk to a fetus and to use an effective method of contraception during treatment and for 6 months after stopping UPLIZNA.

Adverse Reactions: The most common adverse reactions (at least 10% of patients treated with UPLIZNA and greater than placebo) were urinary tract infection and arthralgia.

Please see Full Prescribing Information for more information.

The Glycoengineered Design of UPLIZNA

Glycoengineered Video thumbnail
Transcript

Studies have shown that about 40% of the population has a genetic variation (or polymorphism) that results in a mutation of the Fc gamma receptor 3A (FCGR3A) found on their natural killer (NK) cells.

This genetic mutation reduces the receptor’s ability to bind to monoclonal antibodies, which act as a tether to bring pathogenic B cells to NK cells for destruction via antibody-dependent cellular cytotoxicity (ADCC).

As a result, this genetic variant impacts the ability of this population to achieve efficacy from certain monoclonal antibodies.

In neuromyelitis optica spectrum disorder (NMOSD), patients with this polymorphism who are receiving rituximab may experience insufficient B-cell depletion, require earlier retreatment, and may be at an increased risk of experiencing an attack.

UPLIZNA (inebilizumab) was specifically designed to overcome this genetic barrier. During its development, the Fc region of UPLIZNA was modified in a way to specifically remove a fucose sugar molecule in a process called glycoengineering.

This glycoengineered design of UPLIZNA results in an approximately 10-fold increased affinity, or ability to bind to the FCGR3A receptor on NK cells, regardless of genotype, and thus may enhance ADCC.

For patients with NMOSD, UPLIZNA has demonstrated effective B-cell depletion without the need for dose adjustments, as well as consistent reductions in attack rate, regardless of genotype.

In other words, UPLIZNA is designed for optimized efficacy in the treatment of NMOSD.

INDICATION AND IMPORTANT SAFETY INFORMATION

INDICATION

UPLIZNA (inebilizumab-cdon) is indicated for the treatment of neuromyelitis optica spectrum disorder (NMOSD) in adult patients who are anti-aquaporin-4 (AQP4) antibody positive.

IMPORTANT SAFETY INFORMATION

UPLIZNA is contraindicated in patients with:

  • A history of life-threatening infusion reaction to UPLIZNA
  • Active hepatitis B infection
  • Active or untreated latent tuberculosis

WARNINGS AND PRECAUTIONS

Infusion Reactions: UPLIZNA can cause infusion reactions, which can include headache, nausea, somnolence, dyspnea, fever, myalgia, rash, or other symptoms. Infusion reactions were most common with the first infusion but were also observed during subsequent infusions. Administer pre-medication with a corticosteroid, an antihistamine, and an anti-pyretic.

Infections: The most common infections reported by UPLIZNA-treated patients in the randomized and open-label periods included urinary tract infection (20%), nasopharyngitis (13%), upper respiratory tract infection (8%), and influenza (7%). Delay UPLIZNA administration in patients with an active infection until the infection is resolved.

Increased immunosuppressive effects are possible if combining UPLIZNA with another immunosuppressive therapy.

The risk of Hepatitis B Virus (HBV) reactivation has been observed with other B-cell-depleting antibodies. Perform HBV screening in all patients before initiation of treatment with UPLIZNA. Do not administer to patients with active hepatitis.

Although no confirmed cases of Progressive Multifocal Leukoencephalopathy (PML) were identified in UPLIZNA clinical trials, JC virus infection resulting in PML has been observed in patients treated with other B-cell-depleting antibodies and other therapies that affect immune competence. At the first sign or symptom suggestive of PML, withhold UPLIZNA and perform an appropriate diagnostic evaluation.

Patients should be evaluated for tuberculosis risk factors and tested for latent infection prior to initiating UPLIZNA.

Vaccination with live-attenuated or live vaccines is not recommended during treatment and after discontinuation, until B-cell repletion.

Reduction in Immunoglobulins: There may be a progressive and prolonged hypogammaglobulinemia or decline in the levels of total and individual immunoglobulins such as immunoglobulins G and M (IgG and IgM) with continued UPLIZNA treatment. Monitor the level of immunoglobulins at the beginning, during, and after discontinuation of treatment with UPLIZNA until B-cell repletion especially in patients with opportunistic or recurrent infections.

Fetal Risk: May cause fetal harm based on animal data. Advise females of reproductive potential of the potential risk to a fetus and to use an effective method of contraception during treatment and for 6 months after stopping UPLIZNA.

Adverse Reactions: The most common adverse reactions (at least 10% of patients treated with UPLIZNA and greater than placebo) were urinary tract infection and arthralgia.

Please see Full Prescribing Information for more information.

ICD-10, International Classification of Diseases, Tenth Revision.

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INDICATION UPLIZNA (inebilizumab-cdon) is indicated for the treatment of neuromyelitis optica spectrum disorder (NMOSD) in adult patients who are anti-aquaporin-4 (AQP4) antibody positive.

IMPORTANT SAFETY INFORMATION UPLIZNA is contraindicated in patients with: A history of life-threatening infusion reaction to UPLIZNA…

WARNINGS AND PRECAUTIONS Infusion Reactions: UPLIZNA can cause infusion reactions…

INDICATION AND IMPORTANT SAFETY INFORMATION

INDICATION

UPLIZNA (inebilizumab-cdon) is indicated for the treatment of neuromyelitis optica spectrum disorder (NMOSD) in adult patients who are anti-aquaporin-4 (AQP4) antibody positive.

IMPORTANT SAFETY INFORMATION

UPLIZNA is contraindicated in patients with:

  • A history of life-threatening infusion reaction to UPLIZNA
  • Active hepatitis B infection
  • Active or untreated latent tuberculosis

WARNINGS AND PRECAUTIONS

Infusion Reactions: UPLIZNA can cause infusion reactions, which can include headache, nausea, somnolence, dyspnea, fever, myalgia, rash, or other symptoms. Infusion reactions were most common with the first infusion but were also observed during subsequent infusions. Administer pre-medication with a corticosteroid, an antihistamine, and an anti-pyretic.

Infections: The most common infections reported by UPLIZNA-treated patients in the randomized and open-label periods included urinary tract infection (20%), nasopharyngitis (13%), upper respiratory tract infection (8%), and influenza (7%). Delay UPLIZNA administration in patients with an active infection until the infection is resolved.

Increased immunosuppressive effects are possible if combining UPLIZNA with another immunosuppressive therapy.

The risk of Hepatitis B Virus (HBV) reactivation has been observed with other B-cell-depleting antibodies. Perform HBV screening in all patients before initiation of treatment with UPLIZNA. Do not administer to patients with active hepatitis.

Although no confirmed cases of Progressive Multifocal Leukoencephalopathy (PML) were identified in UPLIZNA clinical trials, JC virus infection resulting in PML has been observed in patients treated with other B-cell-depleting antibodies and other therapies that affect immune competence. At the first sign or symptom suggestive of PML, withhold UPLIZNA and perform an appropriate diagnostic evaluation.

Patients should be evaluated for tuberculosis risk factors and tested for latent infection prior to initiating UPLIZNA.

Vaccination with live-attenuated or live vaccines is not recommended during treatment and after discontinuation, until B-cell repletion.

Reduction in Immunoglobulins: There may be a progressive and prolonged hypogammaglobulinemia or decline in the levels of total and individual immunoglobulins such as immunoglobulins G and M (IgG and IgM) with continued UPLIZNA treatment. Monitor the level of immunoglobulins at the beginning, during, and after discontinuation of treatment with UPLIZNA until B-cell repletion especially in patients with opportunistic or recurrent infections.

Fetal Risk: May cause fetal harm based on animal data. Advise females of reproductive potential of the potential risk to a fetus and to use an effective method of contraception during treatment and for 6 months after stopping UPLIZNA.

Adverse Reactions: The most common adverse reactions (at least 10% of patients treated with UPLIZNA and greater than placebo) were urinary tract infection and arthralgia.

Please see Full Prescribing Information for more information.

INDICATION UPLIZNA (inebilizumab-cdon) is indicated for the treatment of neuromyelitis optica spectrum disorder (NMOSD) in adult patients who are anti-aquaporin-4 (AQP4) antibody positive.

IMPORTANT SAFETY INFORMATION UPLIZNA is contraindicated in patients with: A history of life-threatening infusion reaction to UPLIZNA…

WARNINGS AND PRECAUTIONS Infusion Reactions: UPLIZNA can cause infusion reactions…

INDICATION AND IMPORTANT SAFETY INFORMATION

INDICATION

UPLIZNA (inebilizumab-cdon) is indicated for the treatment of neuromyelitis optica spectrum disorder (NMOSD) in adult patients who are anti-aquaporin-4 (AQP4) antibody positive.

IMPORTANT SAFETY INFORMATION

UPLIZNA is contraindicated in patients with:

  • A history of life-threatening infusion reaction to UPLIZNA
  • Active hepatitis B infection
  • Active or untreated latent tuberculosis

WARNINGS AND PRECAUTIONS

Infusion Reactions: UPLIZNA can cause infusion reactions, which can include headache, nausea, somnolence, dyspnea, fever, myalgia, rash, or other symptoms. Infusion reactions were most common with the first infusion but were also observed during subsequent infusions. Administer pre-medication with a corticosteroid, an antihistamine, and an anti-pyretic.

Infections: The most common infections reported by UPLIZNA-treated patients in the randomized and open-label periods included urinary tract infection (20%), nasopharyngitis (13%), upper respiratory tract infection (8%), and influenza (7%). Delay UPLIZNA administration in patients with an active infection until the infection is resolved.

Increased immunosuppressive effects are possible if combining UPLIZNA with another immunosuppressive therapy.

The risk of Hepatitis B Virus (HBV) reactivation has been observed with other B-cell-depleting antibodies. Perform HBV screening in all patients before initiation of treatment with UPLIZNA. Do not administer to patients with active hepatitis.

Although no confirmed cases of Progressive Multifocal Leukoencephalopathy (PML) were identified in UPLIZNA clinical trials, JC virus infection resulting in PML has been observed in patients treated with other B-cell-depleting antibodies and other therapies that affect immune competence. At the first sign or symptom suggestive of PML, withhold UPLIZNA and perform an appropriate diagnostic evaluation.

Patients should be evaluated for tuberculosis risk factors and tested for latent infection prior to initiating UPLIZNA.

Vaccination with live-attenuated or live vaccines is not recommended during treatment and after discontinuation, until B-cell repletion.

Reduction in Immunoglobulins: There may be a progressive and prolonged hypogammaglobulinemia or decline in the levels of total and individual immunoglobulins such as immunoglobulins G and M (IgG and IgM) with continued UPLIZNA treatment. Monitor the level of immunoglobulins at the beginning, during, and after discontinuation of treatment with UPLIZNA until B-cell repletion especially in patients with opportunistic or recurrent infections.

Fetal Risk: May cause fetal harm based on animal data. Advise females of reproductive potential of the potential risk to a fetus and to use an effective method of contraception during treatment and for 6 months after stopping UPLIZNA.

Adverse Reactions: The most common adverse reactions (at least 10% of patients treated with UPLIZNA and greater than placebo) were urinary tract infection and arthralgia.

Please see Full Prescribing Information for more information.