Sponsored: Informed and Empowered: An Educator’s Journey with Relapsing Multiple Sclerosis
People who have relapsing multiple sclerosis (RMS) know that each patient experiences symptoms differently. But when it comes to the illness I’ve been battling for more than 10 years, there’s one thing all patients can access. It’s the ability to lead a life with optimism and hope. This is the heart of the story I’d like to tell.
Ignoring the Signs
Before 2004, I lived a fairly normal, athletic life, filled with boating, fishing, and horseback riding. Then I started having aches and pains. At first, I assumed they were the result of the active lifestyle I had led since childhood. My earliest memories include tagging alongside my older brother, wanting to do everything he did, and sometimes feeling normal muscle pains at the end of the day.
I continued to tell myself stories. In February 2004, I started feeling like there was a rock in my shoe, which then evolved to my foot feeling asleep at odd times. When the sensation spread up my right side, I told myself that maybe I’d slept wrong or had a pinched nerve. I went to the chiropractor and also tried various solutions at home, but, my symptoms continued to worsen. It reached the point where every time I turned my head, I would feel something like an electric shock. Then my right leg started dragging and my right hand strangely stopped obeying my will. I had trouble holding a pen or picking up a spoon.
One incident in particular led me to take my symptoms more seriously. I was fishing with my nephew when my right leg gave out. I didn’t fall into the pond, but I could have, and I realized I was putting my nephew in danger. This is when I decided to call my friend Nicole, who is a physician’s assistant.
Nicole ordered a spinal tap and MRI to see what was wrong. I thought it was an extreme first step, but I agreed to the tests. When the scan came back, I received a preliminary diagnosis of RMS. Nicole had an immediate, emotional reaction. And, ironically, even though the scary words described my own condition, and my future, I was the one who ended up comforting my friend.
Then, I was referred to the first of two neurologists. Initially, I thought that I’d be fine. But after a day or two, the thoughts came flooding in about what RMS could mean for me.
Finding the Right Doctor to Fight For Me
My first official diagnosis with RMS was at this visit with the neurologist in April 2004. He made me very angry – telling me that life as I knew it was over and that I would have to quit my job. The very first thing he said to me was, “Where is your wheelchair?” I never went back again. But there was an upside: this discouraging experience made me more determined to put as much distance as possible between my lifestyle and the bleak picture he painted.
Within a few weeks, I found my second and current neurologist. Immediately, I felt like RMS was something we could fight together, despite how unsure and scared I initially felt. A weight was lifted. This neurologist told me to remain as active as possible, for as long as possible. It gave me a new sense of empowerment.
My Treatment Journey
It took a while to find my stride, with the help of my medical team. I started out on an injection therapy. After a one-year break from treatment, I started a second injection therapy.
Finally, my doctor had told me about a once-a-day pill called GILENYA® (fingolimod)*. Since then, my symptoms have improved. I love to travel. I often visit my parents’ home, which is 200 miles away.
It’s important to remember that everybody’s experience with GILENYA is different. Although I’ve had two relapses since starting on GILENYA, they were less severe and shorter than in the past. I can rebound from them faster.
*GILENYA can result in a slow heart rate when first taken. You will be observed by a health care professional for at least 6 hours after you take your first dose. You may need to repeat this monitoring if you miss a dose.
Learning All I Could About MS
I work as a teacher and mathematics curriculum director for a public Oklahoma school system, so I’m wired to learn and to pass on knowledge. I think this played a role in my curiosity to find out all I could about my condition and the best ways to manage it.
The Internet has been a tremendous resource, and so have the support groups that welcomed me into the fold. It’s so helpful to get information and advice from peers who are going through the same experiences as you.
A New Normal
RMS has changed me. It has caused me to become a more patient person. I’ve started listening to my body and learning to take better care of myself.
For example, my inability to differentiate between hot and cold has been a concern. One time, I was at work and I was speaking in a room that was so cold the students had to wrap themselves in blankets. I had a short-sleeved shirt on but couldn’t tell I was cold.
To prevent potential mishaps, I’ve developed ways to distinguish temperature differences. Now, I know where the shower handle needs to be turned to keep the temperature warm, but not too hot – and I don’t mess with it. I regulate my clothing layers to make sure I don’t get too hot or cold. Taking cues from what people are wearing around me is a great way to know how I should be dressing.
Of course, there are invisible symptoms that play tricks on me. There’s often a very strange disconnect between how I’m feeling, in my body, and what I’m seeing. I’ll feel like I’ve jammed my finger, for instance, but when I look down at it, I’m absolutely fine. Since I’ve always tried to keep up with my older brother, it’s been quite a lesson learning that it’s okay to slow down for once.
In Oklahoma, where temperatures can get up to 110 degrees in the summer, I no longer feel the need to go outside all the time. I’ve learned it’s okay if I have weeds in the flowerbeds. If I can’t get everything done in one day, it’s perfectly fine, because I can do it tomorrow. As long as the animals on my farm are fed and safe, that’s what matters.
It also helps that I have an amazing support system in my partner, family, and friends. They are incredibly good about helping me and telling me if I need to slow down and take it easy. Even things like sitting on my porch and watching the sunset are great for rest and rejuvenation.
My MS Message
It’s important to combat misperceptions about RMS. The best example is the disheartening message I heard from my first neurologist. People need to know that their lives are not over. You can still have an incredibly joyful, active, and fulfilling life with RMS. You will have some bad days, but there will be more good ones than bad if you just keep fighting.
I think it’s important to also celebrate the little things. I know if I wake up and I can feel my toes and my fingers, and I can see, it’s a great day. I’m aware that I have been very blessed. I know that each person’s experience is unique, and there will always be tough days, but I believe there is always a light at the end of the tunnel. In so many ways, I’ve been able to see and enjoy that light. And though each of us is different, I believe the same can be true for you.
GILENYA is a prescription medicine used to treat relapsing forms of multiple sclerosis (MS) in adults and children 10 years of age and older.
IMPORTANT SAFETY INFORMATION
You should not take GILENYA if in the last 6 months you experienced heart attack, unstable angina, stroke or mini-stroke (transient ischemic attack or TIA), or certain types of heart failure. Do not take GILENYA if you have an irregular or abnormal heartbeat (arrhythmia), including a heart finding called prolonged QT as seen on an ECG, or if you take medicines that change your heart rhythm. Do not take GILENYA if you are allergic to fingolimod or any of the other ingredients.
GILENYA may cause serious side effects such as:
- Slow heart rate, especially after first dose. Adults and children will be monitored by a health care professional for at least 6 hours after the first dose or after a child takes the first dose of 0.5mg of GILENYA when switching from 0.25mg daily dose. Your pulse and blood pressure will be checked hourly. You’ll get an ECG before and 6 hours after your first dose. If any heart problems arise or your heart rate is still low, you’ll continue to be monitored. If you have any serious side effects, especially those that require treatment with other medicines, or if you have certain types of heart problems, or if you’re taking medicines that can affect your heart, you’ll be watched overnight. If you experience slow heart rate, it will usually return to normal within 1 month. Call your doctor, or seek immediate medical attention if you have any symptoms of slow heart rate, such as dizziness, tiredness, feeling like your heart is beating slowly or skipping beats, or chest pain. Symptoms can happen up to 24 hours after the first dose. Do not stop taking GILENYA without consulting with your doctor. Call your doctor if you miss 1 or more doses of GILENYA—you may need to repeat the 6-hour monitoring.
- Increased risk of serious infections, some of which could be life threatening and cause death. You should not receive live vaccines during treatment with GILENYA and for 2 months after you stop taking GILENYA. Vaccines may not work as well when given during treatment with GILENYA. GILENYA lowers the number of white blood cells (lymphocytes) in your blood. This will usually go back to normal within 2 months of stopping GILENYA. Your doctor may do a blood test to check your white blood cells before you start GILENYA. Call your doctor right away if, while taking GILENYA or for 2 months after your last dose, you have fever, tiredness, body aches, chills, nausea, vomiting, or headache accompanied by fever, neck stiffness, sensitivity to light, nausea, and/or confusion. These may be symptoms of meningitis.
- Progressive multifocal leukoencephalopathy (PML). PML is a rare brain infection that usually leads to death or severe disability. If PML happens, it usually happens in people with weakened immune systems but has happened in people who do not have weakened immune systems. Call your doctor right away if you have any new or worsening symptoms of PML that have lasted several days, including changes in your thinking or memory, changes in your vision, decreased strength, problems with balance, weakness on 1 side of your body, loss of coordination in your arms and legs, confusion or changes in your personality.
- Macular edema, a vision problem that can cause some of the same vision symptoms as an MS attack (optic neuritis), or no symptoms. If it happens, macular edema usually starts in the first 3 to 4 months after starting GILENYA. Your doctor should test your vision before you start GILENYA; 3 to 4 months after you start GILENYA; and any time you notice vision changes. Vision problems may continue after macular edema has gone away. Your risk of macular edema is higher if you have diabetes or have had an inflammation of your eye (uveitis). Call your doctor right away if you have blurriness, shadows, or a blind spot in the center of your vision; sensitivity to light; or unusually colored vision.
- Swelling and narrowing of the blood vessels in your brain. A condition called PRES (posterior reversible encephalopathy syndrome) has happened rarely in adults taking GILENYA. Symptoms of PRES usually get better when you stop taking GILENYA. However, if left untreated, it may lead to a stroke. Call your doctor right away if you experience any symptoms, such as sudden severe headache, sudden confusion, seizures, or sudden loss of vision.
- Breathing problems. Some patients have shortness of breath. Call your doctor right away if you have trouble breathing.
- Liver problems. Your doctor should do blood tests to check your liver before you start GILENYA. Call your doctor right away if you have nausea, vomiting, stomach pain, loss of appetite, tiredness, dark urine, or if your skin or the whites of your eyes turn yellow.
- Increases in blood pressure (BP). BP should be monitored during treatment.
- Skin cancers including basal and Merkel cell carcinoma and melanoma. Tell your doctor if you have any changes in the appearance of your skin, including changes in a mole, new darkened area in your skin, a sore that does not heal, or growths on your skin such as a bump that may be shiny, pearly white, skin colored, or pink. While taking GILENYA, limit the amount of time you spend in sunlight and ultraviolet (UV) light as well as use sunscreen with a high sun protection factor and wear protective clothing.
GILENYA may harm your unborn baby. Talk to your doctor if you are pregnant or planning to become pregnant. Women who can become pregnant should use effective birth control while on GILENYA, and for at least 2 months after stopping. If you become pregnant while taking GILENYA, or within 2 months after stopping, tell your doctor right away. It is not known if GILENYA passes into breast milk. Talk to your doctor about the best way to feed your baby if you take GILENYA. A pregnancy registry is available for women who become pregnant during GILENYA treatment. For more information, contact the GILENYA Pregnancy Registry by calling Quintiles at 1-877-598-7237, by e-mailing email@example.com, or by going to www.gilenyapregnancyregistry.com.
Tell your doctor about all your medical conditions, including if you had or now have an irregular or abnormal heartbeat; stroke or mini-stroke; heart problems; a history of repeated fainting; a fever or infection, or if you are unable to fight infections due to a disease or are taking medicines that lower your immune system, including corticosteroids, or have taken them in the past; eye problems; diabetes; breathing or liver problems; or uncontrolled high blood pressure. Also tell your doctor if you have had chicken pox or have received the chicken pox vaccine. Your doctor may test for the chicken pox virus, and you may need to get the full course of the chicken pox vaccine and wait 1 month before starting GILENYA. Children 10 years and older should complete their vaccination schedule before starting GILENYA.
If you take too much GILENYA, call your doctor or go to the nearest hospital emergency room right away.
Tell your doctor about all the medicines you take or have recently taken, including prescription and over-the-counter medicines, vitamins, and herbal supplements.
The most common side effects with GILENYA were headache, abnormal liver tests, diarrhea, cough, flu, sinusitis, back pain, abdominal pain, and pain in arms or legs.
In the pediatric study:
•The safety in children 10 years and older receiving GILENYA was similar to that seen in adults.
•The rate of seizures was higher in GILENYA-treated patients compared to that of a leading injectable.
You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch or call 1-800-FDA-1088.
This post was authored in conjunction with Novartis and its agents. Although Shannan B., the relapsing MS patient, was not compensated for her contribution, she is a paid spokesperson for Novartis.