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:
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.