I love watching sports, especially NASCAR. My husband and I go to as many NASCAR races as we can fit into our busy schedules. I love everything about it – the competition, the successes, and even the defeats. Not knowing what will happen next or who will pull off the big win keeps me on the edge of my seat.
Life with a chronic illness is also unpredictable. Sometimes I feel like I’m competing in my own race, but mine is against a different kind of opponent – relapsing multiple sclerosis (RMS). When I was diagnosed, my life took a sharp turn and I found myself racing down a different track than I had expected.
Meeting My Opponent
My journey with RMS began nearly 30 years ago. At the time, I started experiencing some odd symptoms, and after some hesitation, finally went to my doctor to have them checked out. I had dealt with Lhermitte’s sign – an intense burst of pain like an electric shock that ran down my body when I moved my neck – and had also experienced optic neuritis, so my doctor thought it would be a good idea for me to get an MRI. Days later, he called me at home to tell me there were lesions visible on my MRI – and to officially diagnose me with RMS.
I didn’t know what to think. My symptoms had been mild, quirky, sporadic, and I had been living with them for years, so I didn’t think it was a big deal. I was young, in excellent health otherwise, married, and in the prime of my life.
Taking a Detour
When I told my parents about my diagnosis, I asked them not to tell anyone or even ask me how I was doing. I didn’t want to talk or think about RMS. Instead, I hid what was going on with my body. My neurologist wanted me to start on a medication, but I refused. I had no interest in the medications available. I was in denial and believed that everything was fine.
For about 15 years, this belief put me in “cruise control” mode. Sure, every few years or so, I would have a new weird feeling somewhere in my body, but most of the time it would eventually subside and I went on with my life. I had two beautiful children, worked full-time as a clinical laboratory scientist at a job I loved, and lived with my disease in silence.
Then, in my mid-forties, I turned a corner in my RMS race – I experienced my first relapse in years and soon came to regret my previous decision to not take my diagnosis more seriously early on. I decided that the time had come for me to look for a treatment for my RMS, so I scheduled an appointment with a neurologist. We both agreed that there was no more time to waste.
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.
Approaching the Starting Line
With the advice of my neurologist, I tried several medications, but they did not end up working well for me. My race was getting harder and people could now tell that something was different with me. I was embarrassed, and unhappy that I could no longer hide my diagnosis from the world. I knew I needed to try something else.
Any good race car driver is open to change and is willing to try different things to stay competitive. So, when my doctor told me about an infusion therapy for relapsing MS called LEMTRADA®, I was excited by the prospect of trying something else. A good race car driver also works in partnership with his or her crew to keep up the car, so before making any decisions, I had to consult my support team too.
Working in healthcare, I had the opportunity to discuss the medication with a few different healthcare providers and gathered as much information as I could. I learned that LEMTRADA is given through an infusion in your vein, five days in a row. Then, one year later, there is a second course of IV treatments for three days in a row. LEMTRADA infusions last most of the day, taking about 4 hours to receive one dose of LEMTRADA each day, with at least a 2 hour follow up afterwards for observation to watch for any infusion reactions.
My doctor also told me that LEMTRADA may cause serious side effects during infusions or up to 24 hours or longer after you receive the treatment. It is important to tell your healthcare provider immediately if you experience any discomfort during or after your infusion. You may also be given other medicines before or after the infusion to reduce your chances of getting these reactions or to treat them when they happen.
I also learned that I would need to complete monthly blood and urine tests to help detect possible side effects after my first LEMTRADA treatment and that this would continue until 4 years, or longer, after my last course of treatment. Symptom self-checks and yearly skin checks are also required after treatment with LEMTRADA. I was told that this would help monitor for possible side effects that can show up months or even years after the last infusion, including autoimmune side effects and some kinds of cancers, including skin cancer (melanoma). It is important to have your blood and urine tested, even if you are feeling well and do not have any symptoms from LEMTRADA or your MS. Monitoring may help your healthcare provider find potential side effects early and will increase your chances of getting better from those side effects if treated.
I liked what I was hearing and trusted that my healthcare team would take any precautions necessary to help manage side effects from the treatment. After weighing all the risks and benefits, I made the decision with my husband and my healthcare team to start LEMTRADA.
Continuing My Race Against RMS
Though I took a few detours along the way, I’m keeping my eyes on the road ahead and continuing my race against RMS. I take care of myself and try to be as active as my RMS allows. I enjoy boating, off-roading, and fishing with my family. I eat healthy foods and I surround myself with positive people. Though RMS is complex and complicated, I know that it is important to face the disease head on. From my experience, I am now always encouraging others who are in the same race as me to ask questions, be bold, and use all of the resources available to help with their disease.
Want to read more stories like Debbie’s? Visit LEMTRADA.com for real stories and perspectives from others living with relapsing MS.
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 registered in U.S. Patent and Trademark Office. SAUS.LEMT.18.04.2660. Last updated: 05/2018
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