How One Mom with NMOSD Learned the Value of Putting Her Health First
Life Before My Diagnosis
As a 72-year-old grandmother of five (plus one incredibly cute great-grandson), family is everything to me. I’ve always enjoyed taking care of the people I love, whether that means baking and cooking for them, offering to babysit or hosting holiday gatherings. I’ve spent most of my life taking care of other people. Hiking and camping were some of the few things I did for myself. I’ve always considered myself a strong person, being a Texan and all, and because I stayed fit and active, it never occurred to me to be too concerned about my health.
That could be why I initially overlooked the first signs that something was wrong. At first, I thought I had the flu, nothing too severe, but then I started having extreme, constant pain in my midsection that was too excruciating to ignore. It was out of the ordinary for me to feel sick, so a couple of friends and my niece showed up to take me to the emergency room. I was given medicines for the pain but was ultimately sent home. We made a plan that night that I’d visit my primary care physician (PCP) in the morning to get some answers about what was happening.
I woke up that night in such severe pain that I couldn’t wait until the morning. My daughter took me back to the ER, and I was admitted to the hospital.
When I was first admitted, I couldn’t stand up and started losing feeling in my legs, chalking it up to the pain medicines my doctor had given me. But soon, I lost all feeling in my legs. The doctor informed us my temporary paralysis wasn’t because of the medicine, and although I didn’t want my children to know, that’s when the gravity of the situation sunk in. The thought of losing the ability to use my legs was terrifying. Always looking after my family, I did my best to keep the mood light and comfort them. But on the inside, I was afraid of what would happen next.
I was initially misdiagnosed with Guillain-Barré syndrome. Then, based on test results and new symptoms that showed up, I was told I had transverse myelitis. I was transferred to a rehabilitation facility to help me regain strength in the lower half of my body. It was hard work, but with the support of the amazing staff at the facility, I relearned how to walk. Still, there were symptoms that kept popping up, like balance issues, numbness and tingling in my legs and the inability to feel my feet. Although I was getting better, we knew a piece of the puzzle was missing.
Living with a Rare Disease and Treatment
It wasn’t until I was leaving the rehabilitation facility about six weeks after my initial visit to the ER that I was finally given the correct diagnosis: neuromyelitis optica spectrum disorder (NMOSD).
If you haven’t heard of NMOSD, you’re not alone, I hadn’t either. NMOSD is a rare, lifelong neurological disease caused by inflammation in the central nervous system, which is made up of the optic nerve, brain stem and spinal cord. Without treatment, continued inflammation can lead to severe attacks that can result in permanent disability, including blindness and paralysis.
At the time, there was no FDA-approved treatment for NMOSD, and while that was difficult to hear, my neurologist told me about a clinical trial for the now-approved treatment, known as UPLIZNA® (inebilizumab-cdon). UPLIZNA is a prescription medicine used for the treatment of NMOSD in adults who are anti-aquaporin-4 (AQP4) antibody positive, which I consider vital as it helps to reduce relapses that may lead to permanent disability. My physician also explained that 75-80% of adults with NMOSD have cases that are AQP4-IgG+ and the AQP4 antibody tests are used to test for NMOSD. Immediately, I knew this was something I wanted to participate in, and I was eager to get started.
Fast forward to today: I’m doing much better. Since starting the treatment, I’ve had no additional relapses. The symptoms that I do have, like a tightening pain in my abdomen, occasional trouble with balance, urinary and bowel issues as well as some numbness in my lower extremities, have not worsened since my first known attack. I have not experienced another attack since starting UPLIZNA.
Now, I get an infusion every six months, which fits in with my schedule well as someone with an active lifestyle. And because I get the dose twice a year, it’s easy to schedule and plan time with family.
While everyone responds to treatment differently, I experience a flushed feeling in my face that typically goes away within a few hours. The most common side effects include urinary tract infection and joint pain. These are not all the possible side effects of UPLIZNA.
I’m so happy that I’m doing well on UPLIZNA. Although I can’t run or skip like I used to, my strength and my ability to walk has improved. I’m not completely where I used to be, but I’m thankful I can still enjoy taking care of my family, camping and taking walks. Now, I just need to make sure I’m taking care of myself too.
To learn more about UPLIZNA for NMOSD, visit UPLIZNA.com and see the Important Safety Information below.
What I Want Other Patients to Know
As someone who was always prioritizing the well-being of others, my journey with NMOSD has made me realize how important it is to put my health first. Now, I understand that I can’t take care of others if I’m not taking care of myself, even if I had to learn that lesson the hard way.
If I had to tell people like me facing a rare disease one thing, it would be to listen to your body. You know what is “normal” for your body better than anybody else, so trust your gut when it comes to navigating your health. Looking back, I realize I might have missed some early symptoms of NMOSD – like losing feeling in my feet – because I chalked it up to getting older. I also encourage those living with a rare disease to seek a second and even third opinion if something still doesn’t feel right and your current physician isn’t taking you seriously. In my case, I was lucky to be quickly connected with a neurologist who specialized in NMOSD but I know that finding the right specialist can be difficult. Looking back, I wish I had listened to my body sooner, although I am proud that I put my pride aside and sought urgent medical care when I needed to.
Putting your health first does not diminish your capacity to care for others. If you take care of yourself now, you can ensure you’ll be healthy enough to spend quality time with loved ones in the future. And that just might be the greatest gift you can give.
Mary is an UPLIZNA patient ambassador for Horizon Therapeutics. Her experience may be different from your own, so always speak to a healthcare professional.
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.