Life is unpredictable. Some days things might be going great and then, out of nowhere, you are thrown a curveball. These moments when I am confronted by life’s challenges often leave me feeling helpless and wondering, ‘Why is this happening to me?’
It started in 2011, when I thought I had my life all figured out. At the time, I was working towards a master’s degree, married and had two beautiful children whom I adored – needless to say, things were going great!
But life’s unpredictable nature awakened and sure enough, towards the end of that year, I began experiencing strange aches and pains down my arm and neck. These aches and pains progressed, and one day at work, my feet and waist went numb, followed by an electric shock down my spine when I bent my neck. I immediately had a feeling that one of life’s curveballs was heading my way. I made an appointment with my primary care physician and after a series of MRIs, I was diagnosed with relapsing multiple sclerosis (RMS).
As a self-described “control freak” and someone who always had things figured out, I was in shock and in denial. This was a situation that I had no power over. But after a week, my can-do, persevere-through-anything attitude took over. Rather than waste my time wallowing, I decided to deal with this stressful moment in the best way that I could – remain positive.
Looking back, I have learned a variety of lessons that helped me stay positive and keep myself on track – in life and in my RMS journey. Here are a few:
Do Your Research
When I was first diagnosed with RMS, I didn’t know much about it. My only frame of reference was my sister-in-law, who had passed away from primary progressive MS, a different form of the disease. I knew I had to learn as much about RMS as I could to better understand what I was up against and how it could impact my life.
I started researching to learn about the disease from advocacy organizations such as the National Multiple Sclerosis Society and the Multiple Sclerosis Association of America. There are also other online resources, such as the LEMTRADA Voices of Determination blog, that provide real-world perspectives of others living with RMS.
Most importantly, I talked to my healthcare team to ensure I knew everything I needed to know about my health and my RMS. Grounding myself in the facts helped me feel ready to take on life with a chronic illness.
LEMTRADA® (alemtuzumab) 12 mg IV is a prescription medicine used to treat adults with relapsing forms of multiple sclerosis (MS). Because of its risks, LEMTRADA is generally used in people who have tried 2 or more MS medicines that have not worked well enough. It is not known if LEMTRADA is safe and effective for use in children under 17 years of age.
SELECTED IMPORTANT SAFETY INFORMATION
LEMTRADA can cause serious side effects including autoimmune problems, infusion reactions, some kinds of cancers, thyroid problems, low blood counts (cytopenias), serious infections, inflammation of the gallbladder without gallstones (acalculous cholecystitis), and swelling of lung tissue (pneumonitis). Because of these risks, LEMTRADA is only available through a restricted program called the Risk Evaluation and Mitigation Strategy (REMS) Program.
Slow Down and Learn to Accept Help
Historically, I have always moved too fast and plowed through my pain or stress without paying attention to my body, or ever asking for help. My neurologist was always telling me to slow down, but I felt like I had to prove that I could still be a good wife, mom and employee. Asking for help, or even accepting it when offered, seemed to me like a sign of weakness and defeat.
I soon learned through a few tough lessons that I needed to change my perspective on this. There was one day that I woke up unable to see out of my left eye – and that’s when I finally accepted that I couldn’t go on the way I had been.
Once I began accepting help from those around me, I realized that asking for help wasn’t a weakness. Instead, it was a sign of strength. I also saw that those who offered help did so because they wanted to, not because they had to.
Be Open With Your Care Team
At first, it was difficult for me to be open with my neurologist. When asked about any symptoms I had experienced since our last visit or how I was doing on a current treatment at the time, I never fully divulged. I always thought, ‘Who wants to listen to a whiner?’
One day, my neurologist said to me, “You always have a smile on your face, but I think there is more going on beneath the surface. If you are not honest about how you are feeling, it will be difficult for me to properly help you.” This was a real eye opener for me. How could I expect her to do her job properly to help me feel better, if I wasn’t being honest about what I was experiencing?
From this point on, I knew I had to share everything with my neurologist – the good and the bad. We developed a strong and open relationship. So when discussing different treatment options for me to switch to (after trying several following my diagnosis), I was interested when she mentioned an infusion therapy for relapsing MS called LEMTRADA ® (alemtuzumab) 12 mg IV. We discussed LEMTRADA’s potential risks and benefits at length, and afterwards, I was confident that this was an appropriate treatment option for me.
Find Ways to De-Stress
During the days when I am extra stressed or worried about something like work, I try to relax by participating in activities that I enjoy. For me, the art of de-stressing comes in the form of reading a book, starting a new TV series or swimming.
I also ask myself out-loud sometimes, “Will what you are worried or stressing about right now be important in a week, month or even a year?” This helps put things back into perspective for me and reminds me that like life’s curveballs, I can’t always control everything and that is okay.
Choose to See the Glass Half-Full
When people find out that I have RMS, they always respond the same way – “I would have never thought you were living with a disease, because you’re always laughing and smiling!” While it’s true that I always strive to maintain a positive attitude, there are still the down days that you cannot plan for.
This proved to be true when I experienced the loss of both my father and husband in 2016 in the same week, years after I was diagnosed with RMS. Once again, I was faced with a situation that I had no control over and the grief took me back to my initial RMS diagnosis.
Losing two important people from my support system, like being diagnosed with RMS, changed my life. But these moments reminded me that life is full of choices – we can choose to stay positive and strong, or see these as setbacks in our life.
Today, I choose to see the glass as half-full and keep moving forward. I always say, ‘Don’t give up or give in’—your attitude is the key to your success!
IMPORTANT SAFETY INFORMATION
LEMTRADA can cause serious side effects including:
Serious autoimmune problems: Some people receiving LEMTRADA develop a condition where the immune cells in your body attack other cells or organs in the body (autoimmunity), which can be serious and may cause death. Serious autoimmune problems may include:
- Immune thrombocytopenia, which is when reduced platelet counts in your blood cause severe bleeding that, if not treated, may cause life-threatening problems. Call your healthcare provider right away if you have any of the following symptoms: easy bruising; bleeding from a cut that is hard to stop; heavier menstrual periods than normal; bleeding from your gums or nose that is new or takes longer than usual to stop; small, scattered spots on your skin that are red, pink, or purple
- Kidney problems called anti-glomerular basement membrane disease, which can, if untreated, lead to severe kidney damage, kidney failure that needs dialysis, a kidney transplant, or death. Call your healthcare provider right away if you have any of the following symptoms: blood in the urine (red or tea-colored urine); swelling of legs or feet; coughing up blood
It is important for you to have blood and urine tests before you receive, while you are receiving and every month, for 4 years or longer, after you receive your last LEMTRADA infusion.
Serious infusion reactions: LEMTRADA can cause serious infusion reactions that may cause death. Serious infusion reactions may happen while you receive, or up to 24 hours or longer after you receive LEMTRADA.
- You will receive your infusion at a healthcare facility with equipment and staff trained to manage infusion reactions, including serious allergic reactions, and urgent heart or breathing problems. You will be watched while you receive, and for 2 hours or longer after you receive, LEMTRADA. If a serious infusion reaction happens while you are receiving LEMTRADA, your infusion may be stopped.
Tell your healthcare provider right away if you have any of the following symptoms of a serious infusion reaction during the infusion, and after you have left the healthcare facility:
- swelling in your mouth or throat
- trouble breathing
- fast, slow, or irregular heartbeat
- chest pain
To lower your chances of getting a serious infusion reaction, your healthcare provider will give you a medicine called corticosteroids before your first 3 infusions of a treatment course. You may also be given other medicines before or after the infusion to try to reduce your chances of having these reactions or to treat them after they happen.
Certain cancers: Receiving LEMTRADA may increase your chance of getting some kinds of cancers, including thyroid cancer, skin cancer (melanoma), and blood cancers called lymphoproliferative disorders and lymphoma. Call your healthcare provider if you have the following symptoms that may be a sign of thyroid cancer:
- new lump
- swelling in your neck
- pain in front of neck
- hoarseness or other voice changes that do not go away
- trouble swallowing or breathing
- cough that is not caused by a cold
Have your skin checked before you start receiving LEMTRADA and each year while you are receiving treatment to monitor for symptoms of skin cancer.
Because of risks of autoimmunity, infusion reactions, and some kinds of cancers, LEMTRADA is only available through a restricted program called the LEMTRADA Risk Evaluation and Mitigation Strategy (REMS) Program.
Do not receive LEMTRADA if you are infected with human immunodeficiency virus (HIV).
Thyroid problems: Some patients taking LEMTRADA may get an overactive thyroid (hyperthyroidism) or an underactive thyroid (hypothyroidism). Call your healthcare provider if you have any of these symptoms:
- excessive sweating
- unexplained weight loss
- eye swelling
- fast heartbeat
- unexplained weight gain
- feeling cold
- worsening tiredness
Low blood counts (cytopenias): LEMTRADA may cause a decrease in some types of blood cells. Some people with these low blood counts have increased infections. Call your doctor right away if you have symptoms of cytopenias such as:
- chest pain
- yellowing of the skin or whites of the eyes (jaundice)
- dark urine
- fast heartbeat
Serious infections: LEMTRADA may cause you to have a serious infection while you receive and after receiving a course of treatment. Serious infections may include:
- Herpes viral infections. Some people taking LEMTRADA have an increased chance of getting herpes viral infections. Take any medicines as prescribed by your healthcare provider to reduce your chances of getting these infections.
- Tuberculosis. Your healthcare provider should check you for tuberculosis before you receive LEMTRADA.
- Hepatitis. People who are at high risk of, or are carriers of, hepatitis B (HBV) or hepatitis C (HCV) may be at risk of irreversible liver damage.
- Listeria. People who receive LEMTRADA have an increased chance of getting a bacterial infection called listeria, which can lead to significant complications or death. Avoid foods that may be a source of listeria or make sure foods that may contain listeria are heated well.
These are not all the possible infections that could happen while on LEMTRADA. Call your healthcare provider right away if you have symptoms of a serious infection such as fever or swollen glands. Talk to your healthcare provider before you get vaccinations after receiving LEMTRADA. Certain vaccinations may increase your chances of getting infections.
Inflammation of the gallbladder without gallstones (acalculous cholecystitis):
LEMTRADA may increase your chance of getting inflammation of the gallbladder without gallstones, a serious medical condition that can be life-threatening. Call your healthcare provider right away if you have any of the following symptoms:
- stomach pain or discomfort
- nausea or vomiting
Swelling of lung tissue (pneumonitis): Some people have had swelling of the lung tissue while receiving LEMTRADA. Call your healthcare provider right away if you have the following symptoms:
- shortness of breath
- chest pain or tightness
- coughing up blood
Before receiving LEMTRADA, tell your healthcare provider if you:
- are taking a medicine called Campath® (alemtuzumab)
- have bleeding, thyroid, or kidney problems
- have HIV
- have a recent history of infection
- have received a live vaccine in the past 6 weeks before receiving LEMTRADA or plan to receive any live vaccines. Ask your healthcare provider if you are not sure if your vaccine is a live vaccine
- are pregnant or plan to become pregnant. LEMTRADA may harm your unborn baby. You should use birth control while receiving LEMTRADA and for 4 months after your course of treatment
- are breastfeeding or plan to breastfeed. You and your healthcare provider should decide if you should receive LEMTRADA or breastfeed. You should not do both.
Tell your healthcare provider about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements. LEMTRADA and other medicines may affect each other, causing side effects. Especially tell your healthcare provider if you take medicines that increase your chance of getting infections, including medicines used to treat cancer or to control your immune system.
The most common side effects of LEMTRADA include:
- thyroid problems
- swelling of your nose and throat
- urinary tract infection
- feeling tired
- trouble sleeping
- upper respiratory infection
- herpes viral infection
- fungal infection
- joint pain
- pain in your arms or legs
- back pain
- sinus infection
- mouth pain or sore throat
- tingling sensation
- stomach pain
- sudden redness in face, neck, or chest
Tell your healthcare provider if you have any side effect that bothers you or that does not go away. These are not all the possible side effects of LEMTRADA.
You may report side effects to the FDA at 1-800-FDA-1088.
2018 Genzyme Corporation. All rights reserved. LEMTRADA, Sanofi and Genzyme registered in U.S. Patent and Trademark Office. SAUS.LEMT.18.08.4673. Last updated: 09/2018
The preceding article is content provided by our sponsor Sanofi Genzyme. The views and opinions expressed in the content above are not the views and opinions of Multiple Sclerosis News Today or its parent company, BioNews Services, LLC.
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