As a full-time mother and physical education (PE) teacher, I have a lot of people relying on me to be an active and healthy person, but I’m also someone living with neuromyelitis optica spectrum disorder (NMOSD). NMOSD is an unpredictable autoimmune disease caused by inflammation in the central nervous system, which includes the optic nerve, brain stem, and spinal cord. While living with NMOSD has its challenges, so does raising 3 children, all of whom were very busy growing up and playing recreational sports that I never wanted to miss a single moment of. Even as they get older (my oldest is 25 years old, my middle is 18, and my youngest is 15), we all stay busy, and they understand that I’d do everything in my power to take care of myself so that I can continue to take care of them, too. It was this drive to be the best mother and teacher I could that empowered me to advocate for my health, diagnosis, and eventual treatment for NMOSD.
Life Before Diagnosis
The first sign that something was wrong was when I thought I had a pinched nerve in my neck. I know now that the pain I was experiencing was inflammation developing in the cervical area of my spinal cord, but at the time, I thought it was simply an injury from exercise. I thought I could just take something and get on with my busy life until the pinched nerve slowly developed into a larger problem. One day at work, I started to notice a weakness on my left side. I wasn’t able to grasp things with my left hand. That was a big red flag for me; I was an active, healthy person with an active, healthy family, and this doesn’t happen to “healthy” people, right? Those symptoms continued getting worse, and around 8:30 in the morning, the school nurse thought I had a stroke. At her insistence, I went to the emergency room to get some answers.
I was told by the doctors that I would need to stay and wait for the test results. Eventually, a neurology team came in and told me I had multiple sclerosis (MS). That was in August 2014. It’s common for NMOSD to be confused with MS. They can present really similarly, and MS is simply more well-known than NMOSD. At the time, I was trying to do all the research for MS. However, my attacks kept happening, and I started to wonder if something different was going on. I began to question the neurologist who had diagnosed me, suggesting that something else might be causing my attacks. MS just didn’t fit. He eventually sent me to a second neurologist, who knew a bit more about NMOSD. It would be months of rehabilitation before he later ran more tests to discover that it was in fact NMOSD, not MS.
Life After Diagnosis — Exploring Treatments
The NMOSD diagnosis felt like a step in the right direction for a minute — I had a solid answer that felt more appropriate for my symptoms. That was until I started having more attacks even with treatment under his care. I had to go back to the hospital every three months due to NMOSD attacks. It got so bad that I had repeated hospital stays for five days for steroid treatments. One attack happened right before Christmas, and I actually had a nurse come to my house to administer steroids; I wasn’t going to miss my family Christmas because of NMOSD. I kept questioning the second doctor, asking why treatment still wasn’t helping. While he was open to the queries, he told me there was nothing more he could do and that I needed to see someone who specialized in NMOSD. I felt I had encountered another roadblock and was discouraged about having to see another doctor.
Those initial months were challenging and scary. I went from being a super active person to not being able to take care of myself. Even when I returned to work two and half months after my initial attack, I wasn’t really present, and I was put on light duty. I was using a walker and needed extra assistance, and I wasn’t driving. I was staying with my mom, and I needed help with bathing. I didn’t understand why any of this was happening or why it happened so quickly. There were days when I felt super down and couldn’t stop crying. It was hard not having a doctor knowledgeable about my condition. I thought this was going to be my way of life for the rest of my life.
Several months of treatment and three doctors later, the third neurologist started to instill much-needed confidence in me. He was the first person who seemed to really understand the intricacies of NMOSD and my desire to regain strength and independence. I felt an immense amount of relief after connecting with a neurologist who was confident in his expertise about NMOSD after talking to so many that didn’t know enough to help me. They meant well, but I needed this reassurance from an expert to feel confident in my next steps.
It was that third neurologist who initially brought up the idea of a clinical trial with what is now known as UPLIZNA® (inebilizumab-cdon). I had tried other treatment options that hadn’t worked before, and after learning more about how the medication and infusion worked along with the 6-month dosing schedule from my doctor, I thought I would give it a try. When I first started the infusions, I was still really weak from months of trial and error; I had to use my cane most of the time. The infusion site was a long walk, so I got extra support with a wheelchair. It was tough to get from point A to point B, but as time went on with UPLIZNA, I did notice something positive: my attacks were gone, and I wasn’t having any negative reactions to the treatment. Finally! It was because of my questions, advocating for myself, and persistently pushing for more solid answers about my condition that I was able to find a medication that has worked well for me.
Please see Important Safety Information below.
Life Now and Lessons Learned
Since starting UPLIZNA, I am now able to go about my daily life with minimal challenges. While the numbness and spasms do still occur sometimes, I did regain a lot of the confidence and strength I once had after a few infusions. I was also thrilled that UPLIZNA wasn’t a pill or daily injection because my life is still so busy. Raising three boys is a challenge, so having the freedom to get an infusion once every six months has made life a lot easier.
For anyone reading this that’s seeking answers for their own condition, there may be a lot of trial and error to find a neurologist that really resonates with you. It’s so important to find someone who is confident in what they’re telling you and knowledgeable about your condition. Don’t be afraid to seek those second, third, or fourth opinions. Also, make sure to mention your NMOSD to other doctors who might need to know about it in order to treat other illnesses. As a Black woman, I have encountered some struggles in explaining NMOSD to other physicians. I also have hyperthyroidism, so I have to see an endocrinologist a lot. I’ve mentioned it to him a few times, and every time he says he’s never heard of it. I wish that he’d take that initiative to learn about it because I am a patient under his care. I have the same challenge with my gynecologist; they also say they’ve never heard of it, and it’s frustrating to hear sometimes that they forgot to look it up visit after visit. Still, never stop bringing up what’s important for your doctors to know.
This is where having a great support system filled with people who lift you up comes in handy. In addition to that, remember that you have the strength within yourself to make it through this. It’s important to always challenge yourself and know that you can catch yourself when you fall. And on days that are harder when you need that safety net, that’s when your support system can break the fall. Staying active has also been key for me, not only for disease management but also for my mental health. At the end of the day, never stop advocating for yourself and challenging things that you think may not be true for your experience.
Carla is an UPLIZNA patient ambassador for Horizon Therapeutics. Her experience may be different from your own, so always speak to a healthcare professional.
To learn more about UPLIZNA for NMOSD, visit UPLIZNA.com and see Important Safety Information below.
IMPORTANT SAFETY INFORMATION
What is UPLIZNA?
UPLIZNA is a prescription medicine used to treat adults with neuromyelitis optica spectrum disorder (NMOSD) who are anti-aquaporin-4 (AQP4) antibody positive.
It is not known if UPLIZNA is safe or effective in children.
Who should not receive UPLIZNA?
You should not receive UPLIZNA if you have:
- – had a life-threatening infusion reaction to UPLIZNA.
- – an active hepatitis B virus infection.
- – active or untreated inactive (latent) tuberculosis.
Before receiving UPLIZNA, tell your healthcare provider about all of your medical conditions, including if you:
- – have or think you have an infection.
- – have ever taken, currently take, or plan to take medicines that affect your immune system, or other treatments for NMOSD. These medicines may increase your risk of getting an infection.
- – have or have ever had hepatitis B or are a carrier of the hepatitis B virus.
- – have or have ever had tuberculosis.
- – have had a recent vaccination or are scheduled to receive any vaccinations. You should receive any required vaccines at least 4 weeks before you start treatment with UPLIZNA.
- – are pregnant or plan to become pregnant. It is not known if UPLIZNA will harm your unborn baby. Females should use birth control (contraception) during treatment with UPLIZNA and for 6 months after your last infusion of UPLIZNA.
- – are breastfeeding or plan to breastfeed. It is not known if UPLIZNA passes into your breast milk. Talk to your healthcare provider about the best way to feed your baby if you receive UPLIZNA.
Tell your healthcare provider about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements.
What is the most important information I should know about UPLIZNA?
UPLIZNA may cause serious side effects, including:
Infusion reactions. UPLIZNA can cause infusion reactions that can be serious or may cause you to be hospitalized. You will be monitored during your infusion and for at least 1 hour after each infusion of UPLIZNA for signs and symptoms of an infusion reaction. Tell your healthcare provider right away if you get any of these symptoms:
|
|
|
|
|
|
|
If you develop an infusion reaction, your healthcare provider may need to stop or slow down the rate of your infusion and treat your symptoms.
Infections. Infections can happen during treatment with UPLIZNA. Tell your healthcare provider right away if you have an infection or get any of these symptoms:
|
|
- UPLIZNA taken before or after other medicines that weaken the immune system may increase your risk of getting infections.
- Hepatitis B virus (HBV) reactivation. Before starting treatment with UPLIZNA, your healthcare provider will do blood tests to check for hepatitis B viral infection. If you have ever had hepatitis B virus infection, the hepatitis B virus may become active again during or after treatment with UPLIZNA. Hepatitis B virus becoming active again (called reactivation) may cause serious liver problems, including liver failure or death. Your healthcare provider will monitor you if you are at risk for hepatitis B virus reactivation during treatment and after you stop receiving UPLIZNA.
- Progressive Multifocal Leukoencephalopathy (PML). PML may happen with UPLIZNA. PML is a rare brain infection that leads to death or severe disability. Symptoms of PML may get worse over days to weeks. Call your healthcare provider right away if you get any of these symptoms:
|
|
|
|
|
|
- Tuberculosis (TB). TB is caused by an infection in the lungs. Before starting treatment with UPLIZNA, your healthcare provider will check to see if you are at risk for getting TB or have ever had TB.
- Vaccinations. Certain vaccines, called “live” or “live attenuated” vaccines, are not recommended in people receiving UPLIZNA. Talk to your healthcare provider before receiving any vaccinations. If you have a baby and you were receiving UPLIZNA during pregnancy, it is important to tell your baby’s healthcare provider about your UPLIZNA use so they can decide when your baby should receive any vaccine.
See “What are the possible side effects of UPLIZNA?” for more information about side effects.
How will I receive UPLIZNA?
- UPLIZNA is given through a needle placed in a vein (IV or intravenous infusion) in your arm.
- Before treatment with UPLIZNA, your healthcare provider will give you a corticosteroid medicine, an antihistamine, and a fever prevention medicine to help infusion reactions become less frequent and less severe. See “What is the most important information I should know about UPLIZNA?”
- Your first dose of UPLIZNA will be given as 2 separate infusions, 2 weeks apart.
- Your next doses of UPLIZNA will be given as one infusion every 6 months.
- Each infusion will last about 1 hour and 30 minutes. After each infusion, you will be monitored by a healthcare provider for at least 1 hour.
What are the possible side effects of UPLIZNA?
UPLIZNA may cause serious side effects, including:
- See “What is the most important information I should know about UPLIZNA?”
- low blood cell counts. UPLIZNA may cause a decrease in some types of blood cells. Your healthcare provider will do blood tests to check your blood cell counts.
The most common side effects include urinary tract infection and joint pain.
These are not all the possible side effects of UPLIZNA.
Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088.
Carla, a P.E. teacher and workout enthusiast, began her journey with NMOSD in 2014 after going to the emergency room to determine the cause of numbness and weakness on her left side. After being told she had MS, Carla was ultimately diagnosed with NMOSD and enrolled in the N- MOmentum clinical trial for UPLIZNA in 2015.
carla-d