Everyone’s experience with relapsing multiple sclerosis (RMS) is unique, and everyone’s perspective can offer something valuable. Below, six individuals with RMS share their best advice for those who are newly diagnosed.
Doug, 47
Doug, an oncologist in Massachusetts, spent the day before Thanksgiving 2016 caring for his patients who were living with cancer. While writing his last note of the day, his hand stopped working, and he was unable to continue typing. As he celebrated Thanksgiving the following day with his family, he noticed he couldn’t help bumping into people, among other things.
Confused and concerned, he checked himself into the hospital the next day, where a neurologist scheduled an MRI. The imaging confirmed he had RMS, the most common form of multiple sclerosis (MS), a chronic inflammatory disease that damages the central nervous system and disrupts the flow of information between the brain and body.¹ ² RMS is characterized by periods of flare ups and remissions.² ³
Doug remembers feeling absolutely shook by the diagnosis. Just days earlier, he had been the doctor — not the patient — and felt optimistic about his future.
“I had just turned 40 and had two young children — a 3-year-old and 6-year-old,” Doug explains. “I was just beginning my career as a physician after years of training, earning my PhD, and being married for a decade. There’s a vulnerability when [your idea of the future] gets shattered quite suddenly.”
While taking on the role of patient felt strange and unfamiliar at first, Doug used his medical education, experience, and connections to find a highly trained MS specialist. Working with his MS specialist, Doug began taking KESIMPTA® (ofatumumab) for his RMS. When ready, treatment time takes less than a minute a month* (after completing the three weekly starter doses), and individuals can take KESIMPTA themselves at home or on the go with a pre-filled auto-injector pen.⁴ Finding the right treatment plan for him has allowed Doug the time to continue to do the things he loves.
Doug’s experience has also caused him to become passionate about sharing his knowledge with others who are newly diagnosed with RMS. His best advice? Find the right doctor.
“Finding the right doctor is not about finding the doctor with the most impressive resume,” Doug explains. “RMS is a chronic condition, and your relationship with your RMS specialist is lifelong. Yes, you want a doctor with keen insight into the newest therapies and the evolving science of RMS, but you need a doctor who understands where you are in your life and your values.”
*Once monthly after three weekly starter doses. Typical administration time when ready to inject.
Jamie-Lynn, 43
Jamie-Lynn was diagnosed with RMS 22 years ago while working as a full-time actor. Today, as a mom living with RMS, she faces unique challenges, like struggling to walk far distances from her car to the field to watch her sons’ many baseball games. Although she initially kept her diagnosis a secret, these days she’s more than happy to provide a peek behind the curtain to show others what living with an RMS diagnosis is like.
In collaboration with Novartis, Jamie-Lynn created a 3-step guide with tangible, action-oriented tips for those with RMS. Within this “Reflect, Reframe, and Reach Out” framework outlined in the guide, the hardest part can be reaching out to others for help — but it may also be the most important, especially for parents who are juggling taking care of themselves and their children.
“Asking for help is really hard for a lot of moms, a lot of women, a lot of humans,” Jamie-Lynn explains. “But it’s important, and I’ve learned the beauty in that exchange: People like to help. People like to be of service. It’s a gift that you can both give each other.”
Lastly, she encourages individuals to find their voice. “My doctor likes to say, ‘Your voice should be the loudest in the room,’ and it is. Speaking about what would be best for me is what led us to KESIMPTA. It works for me and allows me to feel like I have some control over my health since I can take it at home or on the go.”
Zenovia, 42
As a young professional in 2014, Zenovia was working as a contractor for the National Institutes of Health (NIH), a role she considered to be her dream job. She felt like she was at the top of her career, yet an all-consuming fatigue was starting to sabotage her work performance. Toward the end of the year when she started feeling numbness in her limbs, she voiced her concerns to her doctors, yet struggled to be taken seriously. Two years later she began presenting symptoms of optic neuritis (inflammation of the eye’s optic nerve) and was officially diagnosed with RMS after further evaluation.⁵
The year following her diagnosis was turbulent, as Zenovia bounced between feelings of shock, sadness, and acceptance. Now that she’s learned to manage her stress and energy levels, and has started KESIMPTA — which she can take herself from the comfort of her home once a month* — she feels she has taken charge of her health.⁴ She encourages those living with RMS, especially individuals who are newly diagnosed, to first remember that everything they’re feeling emotionally is normal and okay. She also highly recommends leaning into a support squad, whether it’s made up of family, friends, or an online community.
“I cannot stress enough that you are going to have a broad range of feelings around uncertainty, fear, and grief,” she explains. “Allow yourself to process these feelings, and partner with a friend, therapist, or support group to help you navigate them. Remember you are still you at your core, and RMS will not change that. Relying on your care team, your own instincts, and choosing a treatment that is best for you are powerful choices I encourage you to make to persevere during this challenging time.”
*Once monthly after three weekly starter doses. Typical administration time when ready to inject.
Luis, 48
In 2014, Luis was enjoying his life in Los Angeles — where he lived with his wife and daughter and worked as a classical composer — when he started struggling with joint pain and blurry vision. His symptoms stumped his primary care provider, and he lived without answers for many years. In 2021, his symptoms exacerbated, and he was finally connected with a neurologist. After months of testing, he was diagnosed with RMS.
Unfortunately, it took another couple of years — and relapses — before discovering KESIMPTA, a B-cell treatment for RMS with proven results† that can be self-administered with an autoinjector pen.
Luis’s journey inspired him to share his experience in order to give hope to others living with RMS.
“My advice is to ask a lot of questions,” he says. “Find an MS specialist who is patient, knowledgeable, and wants to help you feel better. RMS is mysterious, so be sure to ask questions [about your treatment options]. For example, what treatment method would work best for you and your schedule? Do your research. Find a particular treatment’s Facebook group or YouTube channel, and explore.”
†In two studies vs. teriflunomide
Andy, 37
Andy spent years working hard for the life he wanted for himself and for his young family, but one Tuesday in October 2021, everything changed. He woke up with a numb left hand and tingling in his arms and across his stomach, making it difficult to work and perform daily activities. After speaking with a physician’s assistant and undergoing an MRI, he was diagnosed with RMS.
The news was overwhelming at first, especially as a new dad. He felt frustrated and guilty, as he’d always taken good care of his health and considered himself a healthy, active person. To cope, he educated himself about the disease and recommends others who find themselves in a similar situation do the same.
“I would strongly recommend finding a neurologist who specializes in RMS,” Andy says. “Spend time understanding what is important for you as you think through your RMS treatment options. Be collaborative with your MS specialist in deciding what will work best for your needs.”
Andy and his MS specialist decided on KESIMPTA because the once-a-month* injection fit into Andy’s lifestyle. Whether he was traveling or working from home, Andy was able to administer the treatment, when ready, in less than a minute a month after completing the three weekly starter doses.⁴ *
*Once monthly after three weekly starter doses. Typical administration time when ready to inject.
Kristie, 24
Although Kristie had a family history of RMS, she still felt blindsided by her diagnosis. The full-time nursing student found it difficult to maintain her school-and-study schedule due to symptoms like fatigue. While she was able to rely on her family for emotional support, and her fiancé took on the role of caretaker, she still found herself feeling overwhelmed and, at times, afraid for the future.
“[My RMS diagnosis] changed my life drastically,” Kristie explains. “I had times where I broke down and was in tears, and I was worried what my life was going to look like.”
Her biggest piece of advice to others in her shoes is to allow yourself to feel your emotions.
“Let yourself feel scared, sad, confused, mad, etcetera,” she says. “Don’t try to bottle up emotions, because this is a life-changing diagnosis. However, don’t let RMS be who you are. Although it can affect you and aspects of your life, it doesn’t have to take over your identity.”
Taking a moment to reflect on your current situation can also help you reframe your thoughts and seek support from loved ones. To learn more, explore ReframingMS.com to access the 3-step guide designed to help people living with relapsing MS. This guide provides a structured approach to reflecting, reframing, and reaching out, ultimately empowering individuals — wherever they are in their MS journey — to effectively communicate their needs.
Important Safety Information
Who should not take KESIMPTA?
Do NOT take KESIMPTA if you:
– have an active hepatitis B virus (HBV) infection.
– have had an allergic reaction to ofatumumab or life-threatening injection-related reaction to KESIMPTA.
What is the most important information I should know about KESIMPTA?
KESIMPTA can cause serious side effects such as:
– Infections. Serious infections, which can be life-threatening or cause death, can happen during treatment with KESIMPTA. If you have an active infection, your health care provider (HCP) should delay your treatment with KESIMPTA until your infection is gone. KESIMPTA taken before or after other medicines that weaken the immune system may increase your risk of getting infections. Tell your HCP right away if you have any infections or get any symptoms including painful and frequent urination, nasal congestion, runny nose, sore throat, fever, chills, cough, or body aches.
– HBV reactivation. If you have ever had HBV infection, it may become active again during or after treatment with KESIMPTA (reactivation). If this happens, it may cause serious liver problems including liver failure or death. Before starting KESIMPTA, your HCP will do a blood test to check for HBV. They will also continue to monitor you during and after treatment with KESIMPTA for HBV. Tell your HCP right away if you get worsening tiredness or yellowing of your skin or the white part of your eyes.
– Progressive Multifocal Leukoencephalopathy (PML). PML may happen with KESIMPTA. PML is a rare, serious brain infection caused by a virus that may get worse over days or weeks. PML can result in death or severe disability. Tell your HCP right away if you have any new or worsening neurologic signs or symptoms. These may include weakness on one side of your body, loss of coordination in arms and legs, vision problems, changes in thinking and memory, which may lead to confusion and personality changes.
– Weakened immune system. KESIMPTA taken before or after other medicines that weaken the immune system could increase your risk of getting infections.
Before you take KESIMPTA, tell your HCP about all your medical conditions, including if you:
– Have or think you have an infection including HBV or PML.
– Have ever taken, currently take, or plan to take medicines that affect your immune system. These medicines could increase your risk of getting an infection.
– Have had a recent vaccination or are scheduled to receive any vaccinations.
- You should receive any required ‘live’ or ‘live-attenuated’ vaccines at least 4 weeks before you start treatment with KESIMPTA. You should not receive ‘live’ or ‘live-attenuated’ vaccines while you are being treated with KESIMPTA and until your HCP tells you that your immune system is no longer weakened.
- Whenever possible, you should receive any ‘non-live’ vaccines at least 2 weeks before you start treatment with KESIMPTA.
- Talk to your HCP about vaccinations for your baby if you used KESIMPTA during your pregnancy.
– Are pregnant, think that you might be pregnant, or plan to become pregnant. It is not known if KESIMPTA will harm your unborn baby. Females who can become pregnant should use birth control (contraception) during treatment with KESIMPTA and for 6 months after your last treatment. Talk with your HCP about what birth control method is right for you during this time.
– Are breastfeeding or plan to breastfeed. It is not known if KESIMPTA passes into your breast milk. Talk to your HCP about the best way to feed your baby if you take KESIMPTA.
Tell your HCP about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements.
How should I use KESIMPTA?
See the detailed Instructions for Use that comes with KESIMPTA for information about how to prepare and inject a dose of KESIMPTA and how to properly throw away (dispose of) used KESIMPTA Sensoready pens or prefilled syringes.
– Use KESIMPTA exactly as your HCP tells you to use it.
– Your HCP will show you how to prepare and inject KESIMPTA the right way before you use it for the first time.
– Do not inject into areas where the skin is tender, bruised, red, scaly or hard. Avoid areas with moles, scars, or stretch marks.
KESIMPTA may cause serious side effects including:
– Injection-related reactions. Injection-related reactions are a common side effect of KESIMPTA. Injecting KESIMPTA can cause injection-related reactions that can happen within 24 hours (1 day) following the first injections and with later injections. There are two kinds of reactions:
- at or near the injection site: redness of the skin, swelling, itching, and pain. Talk to your HCP if you have any of these signs and symptoms.
- that may happen when certain substances are released in your body: fever, headache, pain in the muscles, chills, tiredness, rash, hives, trouble breathing, swelling of the face, eyelids, lips, mouth, tongue and throat, and feeling faint, or chest tightness. Contact your HCP right away if you experience any of these signs and symptoms, especially if they become worse or you have new severe signs of reactions after subsequent injections. It could be a sign of an allergic reaction, which can be serious.
– Low immunoglobulins. KESIMPTA may cause a decrease in some types of antibodies. Your HCP will do blood tests to check your blood immunoglobulin levels.
The most common side effects of KESIMPTA include:
– Upper respiratory tract infection, with symptoms such as sore throat and runny nose, and headache.
– Headache.
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.
Please see full Prescribing Information including Medication Guide.
Indication
What is KESIMPTA (ofatumumab) injection?
KESIMPTA is a prescription medicine used to treat adults with relapsing forms of multiple sclerosis (MS) including clinically isolated syndrome (CIS), relapsing-remitting disease, and active secondary progressive disease.
It is not known if KESIMPTA is safe or effective in children.
References
- Hunter SF. Overview and Diagnosis of Multiple Sclerosis. Am J Managed Care. 2016;22:S141-S150.
- Trip, SA, Miller DH. Imaging in multiple sclerosis. J Neurol Neurosurg Psychiatry. 2005 Sep;76 Suppl3(Suppl3):iii11-iii18.
- Multiple Sclerosis International Federation. Atlas of MS 3rd Edition. Part 1: Mapping multiple sclerosis around the world. Accessed July 28, 2023.
- Kesimpta Prescribing Information. East Hanover, NJ: Novartis Pharmaceuticals Corp; April 2024.
- Mayo Clinic. n.d. Optic neuritis. https://www.mayoclinic.org/diseases-conditions/optic-neuritis/symptoms-causes/syc-20354953.
Images: Courtesy of Novartis; Heather Moore/BDG
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