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    Mary Canning

    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: headache sleepiness fever rash nausea shortness of breath muscle aches 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: painful and frequent urination nasal congestion, runny nose, sore throat, fever, chills, cough, body aches 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: – weakness on one side of the body – changes in your vision – confusion – loss of coordination in your arms and legs – changes in thinking or memory – changes in your personality 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. 08/22 P-UPZ-US-00408

    Community Voices

    State of Unbelief… #FND ?
    #nowayihavethat !

    <p>State of Unbelief… <a class="tm-topic-link mighty-topic" title="FND" href="/topic/fnd/" data-id="5b23ce8000553f33fe992d04" data-name="FND" aria-label="hashtag FND">#FND</a> ?<br><a class="tm-topic-link ugc-topic" title="nowayihavethat" href="/topic/nowayihavethat/" data-id="631683fa4895130036bf0c51" data-name="nowayihavethat" aria-label="hashtag nowayihavethat">#nowayihavethat</a> !</p>
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    A Patient-Centered Approach to Managing NMOSD

    Life with a chronic health condition can feel overwhelming and lonely, especially when it’s a rare disease that often goes misdiagnosed. This is the reality for the estimated 10,000-15,000 people in the U.S. who live with neuromyelitis optica spectrum disorder (NMOSD), sometimes referred to as Devic’s disease. NMOSD is an unpredictable autoimmune disease driven by severe attacks to the spinal cord and optic nerve, which can cause lasting pain, vision loss, paralysis and sensory loss. 1 Christine, who lives with NMOSD, says this about experiencing an attack: “You’ll get an ‘attack’ out of the blue, and you don’t know how it’s going to affect you or how long it’s going to take to recover. I tell people it’s sort of like multiple sclerosis (MS), which NMOSD is often misdiagnosed as, but all the damage is done during that one attack. NMOSD doesn’t build up over time: instead, you just get the attack, then wait and see if you get better with whatever treatment you’re using. ” Early intervention and effective management are key to preventing permanent damage caused by NMOSD attacks. We talked with Dr. Ahmed Obeidat, a neurology specialist, about his patient-centered approach to treating NMOSD. What have you learned from helping people living with NMOSD? I’ve been working with adults who have MS and other autoimmune disorders of the central nervous system, including NMOSD, since 2008. Over those 14 years, I’ve come to understand that each patient is different, from their symptoms and treatment expectations to how they handle the emotional burden of living with a chronic rare disease. I’m continuously inspired by the strength and determination of the NMOSD community and have learned how powerful the patient voice is. As physicians, it’s our responsibility to truly listen to our patients as we make treatment decisions. What role should NMOSD patients play in their care? In my practice, the patient is the captain of the care team. We encourage them to talk openly with us. It’s through this openness that a long-lasting relationship is formed that leads to the best outcomes. Every patient, no matter who their doctor is, should feel empowered to speak up and ask for the care they deserve. How can patients better advocate for themselves? I tell my patients to keep a journal of their symptoms and flag any changes or irregularities. For instance, if they are more tired than usual or they can no longer do a certain activity—no matter how unimportant it may seem—I want to know about it. It’s also important for me to be aware of any side effects they are experiencing from their treatments so we can determine together whether there may be a better option for them. Remember, you know your body best and if something doesn’t seem right, speak up. If a doctor isn’t taking your concerns seriously, or it seems as though they aren’t listening to you, then it may be beneficial to get a second opinion from a different specialist. How does the science of NMSOD influence treatment decisions? NMOSD occurs when the body’s immune system, comprised of B cells, antibodies and other key elements, mistakenly attacks healthy cells in the central nervous system, leading to inflammation. B cells have multiple functions in the body to protect us from disease, such as producing antibodies that are helpful in recognizing and fighting infection. 2 In the case of NMOSD, these antibodies recognize the body’s cells as “invaders.” Understanding the role of B-cells in NMOSD is important because it allows us to decide with our patients whether a B-cell depleting medicine may be right for them. How have options for treating NMOSD changed over the past few years? The NMOSD treatment landscape has changed immensely over the past few years with the U.S. Food and Drug Administration (FDA) approval of three medicines. For instance, there is now an FDA-approved medicine called UPLIZNA® (inebilizumab-cdon) that works by reducing the number of B cells in the body. 3 It is an intravenous (IV) infusion, which means it is delivered through a needle that is placed in the patient’s arm. It is given twice a year after two initial start-up doses. 3 What should patients consider when choosing a treatment with their doctor? It is important to understand the safety and efficacy (how well it works) of different medicines. It can be helpful to visit the official website for each medicine to learn about the results of the clinical studies on which FDA approval was based, the side effects that others have experienced and how the medicine is given. I also discuss lifestyle preferences with my patients. For instance, would they prefer to have a healthcare professional administer their treatment or do it on their own from home? Another common discussion is around dosing and whether they prefer to have to take a medicine less frequently. Overall, I want patients to be an advocates for their health and approach treatment decisions as a shared decision-making process with their healthcare team—remembering there are options available. How do you know when it may be time for a patient to try a different medicine? In general, the most common reason patients are transitioned to a different medicine is if they have a new attack or serious side effects. But there can also be more subtle reasons to switch, like nagging symptoms, side effects that are no longer manageable or a dosing schedule that is too frequent to maintain. Overall, every patient experience is unique and so too are the reasons for switching treatments. I encourage my patients to keep track of their symptoms and how they are feeling and have an open dialogue with their doctor about their options. Dr. Obeidat participated in this interview in partnership with Horizon Therapeutics. 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: headache sleepiness fever rash nausea shortness of breath muscle aches 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: painful and frequent urination nasal congestion, runny nose, sore throat, fever, chills, cough, body aches 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: – weakness on one side of the body – changes in your vision – confusion – loss of coordination in your arms and legs – changes in thinking or memory – changes in your personality 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. 1 Ajmera MR, Boscoe A, Mauskopf J, Candrilli SD, Levy M. Evaluation of comorbidities and health care resource use among patients with highly active neuromyelitis optica. J Neurol Sci. 2018;384:96-103. 2 Forsthuber TG, Cimbora DM, Ratchford JN, Katz E, Stüve O. B cell-based therapies in CNS autoimmunity: differentiating CD19 and CD20 as therapeutic targets. Ther Adv Neurol Disord. 2018;11:1756286418761697. 3 UPLIZNA (inebilizumab-cdon) [prescribing information] Horizon. 07/22 P-UPZ-US-00340

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    Christine Barton

    My Journey With Neuromyelitis Optica Spectrum Disorder

    How would I describe neuromyelitis optica spectrum disorder (NMOSD)? That’s a tough question. You never know what you’re going to get. You’ll get an “attack” out of the blue, and you don’t know how it’s going to affect you or how long it’s going to take to recover. I tell people it’s sort of like multiple sclerosis (MS), which NMOSD is often misdiagnosed as, but all the damage is done during that one attack. NMOSD doesn’t build up over time; instead, you just get the attack, then wait and see if you get better with whatever treatment you’re using. Like so many invisible illnesses, but especially with NMOSD because it’s so rare and relatively unknown, it’s hard for others to understand what you’re going through. You look like one thing on the outside, but on the inside your body is a different story. The First NMOSD Attack My first experience of NMOSD symptoms was an interesting one. I was in San Diego for a veterinarian work conference in 2004, and I kept feeling this strange sensation in my leg. I was having trouble moving around. One night, when my coworkers and I were out eating at a restaurant, I got up from the table, and my hip felt like it popped out of place. It caused an immense amount of pain; I thought I had hurt my back! The odd sensations progressed over the next few weeks to where my feet eventually went numb, which then spread to under my chest, causing me to not feel anything below that point on my body. I also started falling all the time. It was really scary because I didn’t have any answers yet, and my body felt like it was rebelling. The hardest symptoms were that numbness — that lack of feeling in my legs — and the pain in my back. I knew I needed to seek medical attention, which then included an MRI to try and pinpoint the issue. It took months to get a diagnosis, and those months felt so long. By that point, the numbness had transformed into temporary paralysis lasting about five months. I had to take a leave of absence from my job as a vet technician, and I moved back in with my parents to get the support I needed. They had to drive me back and forth when I eventually did return to work; I was fully reliant on them to get around. I couldn’t take care of myself or my dogs, who have always been my constant support and staple in life. I started intense physical therapy to help with my symptoms, and I did regain some strength and feeling in my legs to be able to walk again. But the pain was still there, and completing everyday tasks, such as drying off after a shower, caused more pain. It was a constant push and pull, and I was feeling more hopeless as time went on. Road to Diagnosis Eventually I went to the University of Pennsylvania and was placed in the neurologic intensive care unit (ICU). At first, the doctors thought it was transverse myelitis, which is inflammation of a section of the spinal cord, based on my previous MRI results. However, that wasn’t fitting with all that I was experiencing. There was one neurology resident there who kept looking into my case after she noticed I was coming in frequently for follow-up visits and more tests. It wasn’t until they tested for aquaporin-4 (AQP4) antibodies in my blood that they recognized it as NMOSD. While it was a scary diagnosis, a part of me was relieved to finally have a solid answer, and I have that neurology resident’s persistence to thank for that. Back in the early 2000s, there wasn’t much information out there about NMOSD. However, I was fortunate to start seeing a new doctor through the Guthy-Jackson Charitable Foundation in 2009 who specialized in the field. I can’t explain the relief I felt by finally connecting with doctors who were so familiar with this rare condition. A lot of physicians I had spoken to over the years wanted to treat it like MS, but that doesn’t work. These new doctors knew how to address it in the right way for me, and I finally started to feel like things were moving in the right direction. Despite being connected with knowledgeable neurologists, the attacks still weren’t stopping; I continued to have them sporadically, even while on different medications. Attacks felt like sensation differences in my body, and these would be a warning that something was about to happen. An example would be that I would start to experience sensitivity in my legs to extreme cold or heat. Even though I could typically bounce back from these attacks, I was hesitant to live my life fully because I didn’t know when they would occur. I was afraid to travel and felt vulnerable all the time. When I did go places, I always bought travel insurance just in case. Switching between different medications to try and minimize the attacks was stressful too; nothing was working. I’ve never been good at taking pills and would sometimes forget to take them as prescribed. In my experience, other medications would need approval from insurance, and they’d always arrive late. It felt like such a hassle and another stressor that I didn’t need in my life. I’d gotten so used to having attacks by that point that I started bringing a suitcase to the hospital when the symptoms would start again. I just knew I’d be in the hospital for a few days even before the doctors would tell me — one for the full day of treatments, then another just to recover from it. Discovering New Treatment Options and Support The attacks weren’t stopping, and it was time to switch it up again. In 2017, my doctor and I decided to enroll me in a clinical study for a new treatment, now known as UPLIZNA ® (inebilizumab-cdon). They explained to me that UPLIZNA is for people who live with AQP4-IgG+ NMOSD and works by depleting the B cells, which are immune system-specific cells that create the antibodies that can lead to the disease. It was also an infusion, so no pills! After learning more about the medicine, I felt like it was the right treatment for me. It had been more than 10 years since my initial diagnosis, and I needed to try something new. Thankfully, I have had a positive experience using UPLIZNA. Even now when I feel some of my symptoms during strenuous activities, I can plan ahead of time and not worry about it as much. I also have financial support with copays and medical coverage. I get an infusion once every six months and have routine blood work every three months, then I just go about my day. Although everyone responds to treatment differently, after my infusion, I am able to make the long drive home and go to work the next day. I leave the suitcase at home, and I don’t have to take extra time off work to manage my care, which is huge for me. Also, my doctor told me the common side effects of UPLIZNA include urinary tract infection and arthralgia (joint pain), but I haven’t had any side effects to date.  I still experience some NMOSD symptoms today like sensation differences, similar to the feeling of bugs crawling on my legs after strenuous activity, but I haven’t let that stop me from doing the things I enjoy, like gardening, cooking, and spending time on my boat with friends. But the best part? I haven’t had any attacks. A couple of years ago, I was even able to take my niece and nephew on a trip to Disney without me having to worry that an attack may hinder our time at the parks. Because I feel like my symptoms are under control, the fear of having an attack no longer holds me back. To anyone who has been recently diagnosed with NMOSD, remember to advocate for yourself and find a doctor who will listen to you. Surround yourself with support. I was fortunate to find a Google group of people who live with NMOSD and to later connect with people from the Guthy-Jackson Charitable Foundation; so yes, there are other people out there! It’s important to have that support system to rely on, especially in the beginning when you don’t know what is going on. I’ve met some of my best friends in these groups. It also helps to seek out information. I was looking for a neuroimmune-related conference, and that’s how I found Guthy-Jackson and all they do to support the NMOSD community. I really like the patient days and conferences. Doctors from all over the world come to these events, and you can ask them questions. It’s also a great opportunity for me to support newly diagnosed people, because I’ve lived with NMOSD for so long. I would encourage you to seek out similar support, especially if your family and friends struggle to understand what you’re going through. It can help you stay positive to connect with others who understand your journey through diagnosis and exploring treatment options. Christine 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: headache sleepiness fever rash nausea shortness of breath muscle aches 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: painful and frequent urination nasal congestion, runny nose, sore throat, fever, chills, cough, body aches 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: – weakness on one side of the body – changes in your vision – confusion – loss of coordination in your arms and legs – changes in thinking or memory – changes in your personality 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.

    Community Voices

    I don’t think I can handle doing the grocery shopping anymore, it’s just to hard and causes a lot of pain

    I want to as independent as I can, I want to help my dad wherever I can but grocery shopping takes like 2 days to recover from # nmo #ChronicPain

    7 people are talking about this
    Community Voices

    A great patient empowerment story here on the Mighty: Go read "This Is Not MS' by Tamanika Zinger

    <p>A great patient empowerment story here on the Mighty: Go read "This Is Not <a href="https://themighty.com/topic/multiple-sclerosis/?label=MS" class="tm-embed-link  tm-autolink health-map" data-id="5b23ce9f00553f33fe998486" data-name="MS" title="MS" target="_blank">MS</a>' by Tamanika Zinger</p>
    Sponsored by
    Carla Douglas

    Never Stop Advocating for Yourself With NMOSD

    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: headache sleepiness fever rash nausea shortness of breath muscle aches 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: painful and frequent urination nasal congestion, runny nose, sore throat, fever, chills, cough, body aches 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: – weakness on one side of the body – changes in your vision – confusion – loss of coordination in your arms and legs – changes in thinking or memory – changes in your personality 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.

    Tamanika Zinger

    'This Is Not MS' -- When I Was Diagnosed With Neuromyelitis Optica

    Nine years and three neurologists — this is what it took to get my diagnosis correct. I experienced dizziness and pain in my eye, was unsteady on my feet, and lost hearing in one ear. I have neuromyelitis optica spectrum disorder (NMOSD) — a rare, lifelong, and debilitating autoimmune disease of the central nervous system that primarily damages the optic nerve(s) and spinal cord. But for nine years, my life was at risk because of an incorrect diagnosis of multiple sclerosis (MS). I tried numerous — often painful — therapies to treat a condition I did not have. During those nine years, my life did not stop. I got married, and we had two boys. We bought a home, started and left jobs, and went about the business of building our lives together. So, by the time I met my third, and current, neurologist, I was wholly unprepared for the words he would utter: “This is not MS.” But I wouldn’t have heard those words at all if I hadn’t taken control of my own health. Two months prior to the consultation that would change everything, my brother encouraged us to find a new neurologist. He didn’t think my previous neurologist was treating me, the patient; rather, he was treating the MS, a diagnosis we believed might not even be accurate. My health was deteriorating, and my medications were not helping. I was having trouble understanding the results of my MRIs and why the sight in one of my eyes had not yet returned. I decided my brother was right: my doctor and I were not effectively communicating. After ongoing conversations, my family and I felt we needed a doctor who was involved in clinical research, because it was clear that what I was facing was something uncommon. I had heard a neurologist speak who I thought might be a good choice. We looked the doctor up and he was involved in clinical research. We contacted the office and were told there was a month’s wait for an appointment. That wait was extremely hard, but I knew it was a step in the correct direction. Prior to our initial meeting, my current neurologist thoroughly reviewed all of my MRIs and my entire medical history. During our meeting, he encouraged our questions and answered them honestly. He explained his findings — and what he believed — in a way I could finally understand. And those four words, “this is not MS,” would forever change the path of my treatment. Communication with your doctor is key. If your doctor is talking to you and you don’t know the words or terminology, ask the doctor to stop and explain. This is your body: know what is going on. Restate the doctor’s words using your own and confirm you are understanding correctly. It is easy to feel intimidated during an appointment with an expert, but remember, you are the expert on your body. You know how it feels and what is happening with it on a daily basis. For example, I was once told to “learn my veins.” At first, I thought that was odd advice. How could I possibly learn my veins when there are so many and I’m not even in the medical field? I began studying the veins in my arms and hands daily and researching vein health. Understanding my body helped the nurses find the best vein with the least discomfort. I felt empowered by taking part in my own health care process, which encouraged me to start advocating for myself and people like me in other ways. It wasn’t until I started sharing my story that I realized I was able to help others in similar situations. Living with a rare disease can sometimes feel isolating, and meeting others who live with rare diseases creates a unique bond. That bond can offer tremendous support and resources as similar treatments and experiences are shared. I knew advocating for myself was not enough and I didn’t want others to go through what I had. I discovered The Sumaira Foundation (TSF), whose mission is to bring light and hope to people living with NMOSD through research and a community of support. I became TSF’s Ambassador for Arizona and fundraised until COVID hit. Then there was another need. People with NMOSD were feeling isolated, so TSF created the Human Collective Project (HCP), which allows anyone impacted by NMOSD to meet in a safe space, discuss anything, and share their stories. I was also able to take my advocacy to Capitol Hill during a Rare Disease Week event. I met virtually with senators and shared my experience with NMOSD. I was able to speak about the need for awareness about NMOSD and other rare conditions and to help others not experience a delay in diagnosis and treatment, as I did. My advocacy work has given me a purpose beyond this condition. I know that the more people hear about NMOSD, the less it will be unknown. And maybe others will not have to endure nearly a decade before being correctly diagnosed and treated.Taking charge of your health gives you a voice in all aspects of your care. It gives you back something you may have lost with your disease. It offers a feeling of control in a situation that too often can make you feel you have none. For those newly diagnosed, don’t give up! Don’t be afraid to get involved and ask questions. The more you know, the more empowered you will feel. And no one — and nothing — can take that away from you.

    Community Voices
    lubya

    New and looking for support

    Hi I'm new on here and I'm looking for some support I have anxiety and depression that us undiagnosed after being diagnosed with a rare disease called neuromyelitus optica or NMO for short and I was looking for somone in a simarlar situation to me #Depression #RareDisease

    17 people are talking about this
    Community Voices

    Neuro-ophthalmogist - which tests he can do for pain in the eyes, blurry vision, tunnel vision? Devics Disease maybe?

    I have problems with spine but I also have a symptoms of multiple sclerosis. It wasn’t confirmed because I don’t have lesions on my brain. Neurosurgeon told me I have strange looking spinal cord but non of doctors told me the details. I ware eyeglasses but in last 2 years my vision gets blurry, I had pain in my right eye, I have tunnel vision. I don’t have glaucoma. My neuro - ophthalmologist will admit me to hospital for several test. Does anyone have any suggestions, personal experience? #VisionLoss #eyehealth #MultipleSclerosis #ChronicPain #PinchedNerve #Disability #DevicsDisease

    5 people are talking about this