Living With MS: Asking for Help Is a Sign of Strength
After years of feeling “just okay,” Jennifer found an effective treatment—and a path back to doing what she loves.
MAR 30, 2022
An education consultant in Texas, Jennifer was active, busy, and very happy in her 20s. She enjoyed running in her free time and traveled for her job, which she found rewarding. Yet she felt there was something off. As it turns out she was right. At 25, Jennifer was diagnosed with multiple sclerosis (MS). And she was shocked. She was young and healthy. How could this be?
Jennifer’s career was going great—she earned advanced degrees and was even a guest lecturer at an elite university—few of her colleagues knew the extent of her battle. Even some friends and family were in the dark.
JENNIFER
“Okay, enough!”
Then, a few years ago, Jennifer noticed more prominent symptoms, including numbness in her legs. While she tried to push through, her symptoms continued to worsen, and her next MRI showed new lesions—indications that her condition was progressing and her initial treatment was no longer keeping her RMS in check.
“It’s common for people with RMS to hesitate to ask for help,” says Andrew Woo, M.D., Ph.D., a neurologist at Santa Monica Neurological Consultants in California. “Initial signs might be mild, or wax and wane, so people don’t always get them checked out,” he says. As a result, the RMS can go undiagnosed for months or even years.
asking about other treatment options. Medical breakthroughs have greatly improved the prognosis for people living with RMS—including more than 20 currently available medications for treating MS, Dr. Woo notes. So it’s key to talk with your doctor, whether you are newly diagnosed or notice your current treatment may no longer doing the job.
“From the comfort of your own home.”
Consulting with an MS specialist was a turning point for Jennifer. With the help of the neurologist, she started a treatment called Kesimpta (ofatumumab), the first and only self-administered B-cell injection therapy for people living with RMS. “Kesimpta is what’s considered a high-efficacy therapy, based on their data,” says Dr. Woo. Kesimpta is a targeted and precisely delivered B-cell therapy that takes one minute a month when the patient is ready to administer. "You can do it from the comfort of your own home.”
“[My doctor] said, ‘I think this is something that’s going to work well for you.’…And he was right.” She self-administers the medication at home once a month after three weekly starter doses. In clinical studies, conducted by the manufacturer, Kesimpta reduced the RMS activity you see (relapses and disability progression) and the activity you don’t (lesions on MRI scans). Kesimpta also demonstrated an overall safety profile similar to teriflunomide, an oral treatment for RMS. High efficacy, demonstrated safety, and the patient’s routine are all important considerations for patients and their neurologists to discuss as they evaluate different treatment options and come to a decision together.
“I just completed a mini triathlon!”
With the consult of her doctor and other lifestyle changes, Jennifer has been able to continue doing the things she loves, such as running.
JENNIFER
Dr. Woo emphasizes that RMS patients have more tools and treatment options than five or 10 years ago. “In my opinion, there’s something for every type of RMS and every type of person, depending on their lifestyle, goals, and medical history."
“Have that conversation with your doctor.”
In addition to balanced eating, Jennifer credits her close group of family, friends, and others in the MS community for helping her live well. Sharing her experiences was an important part of her journey. And their encouragement helped her overcome her reflex of acting like everything was fine—and finally get the care she needed.
*As per stability technical specification data, when the patient is ready to inject, it typically takes less than 1 minute a month to administer. Initial dosing period consists of 20 mg subcutaneous doses at weeks 0, 1, and 2. Subsequent once monthly dosing. Please see Instructions for Use for more detailed instructions on preparation and administration of Kesimpta.
National Multiple Sclerosis Society. Relapsing-remitting MS (RRMS). Accessed February 25, 2022. https://www.nationalmssociety.org/What-is-MS/Types-of-MS/Relapsing-remitting-MS
Guthrie E. Multiple sclerosis: a primer and update. Adv Studies Pharm. 2007;4(11):313-317.
Trip SA, Miller DH. Imaging in multiple sclerosis. J Neurol Neurosurg Psychiatry. 2005 Sep;76 Suppl 3(Suppl 3):iii11-iii18.
Mayo Clinic. Multiple sclerosis: symptoms & causes. Accessed February 25, 2022. https://www.mayoclinic.org/diseases-conditions/multiple-sclerosis/symptoms-causes/syc-20350269
Multiple Sclerosis International Federation. Atlas of MS 2013. Accessed February 25, 2022. http://www.msif.org/wp-content/uploads/2014/09/Atlas-of-MS.pdf
National Multiple Sclerosis Society. MS signs & symptoms. Accessed February 25, 2022. https://www.nationalmssociety.org/Symptoms-Diagnosis/MS-Symptoms
Lakin L, Davis BE, Binns CC, Currie KM, Rensel MR. Comprehensive Approach to Management of Multiple Sclerosis: Addressing Invisible Symptoms-A Narrative Review. Neurol Ther. 2021;10(1):75-98.
Kurtzke JF. Rating neurologic impairment in multiple sclerosis: an expanded disability status scale (EDSS). Neurology. 1983 Nov;33(11):1444-52.
Kappos L, Butzkueven H, Wiendl H, et al. Greater sensitivity to multiple sclerosis disability worsening and progression events using a roving versus a fixed reference value in a prospective cohort study. Mult Scler. 2018;24(7):963-973.
Gaitán MI, Correale J. Multiple Sclerosis Misdiagnosis: A Persistent Problem to
Solve. Front Neurol. 2019;10:466. Published 2019 May 7. doi:10.3389/fneur.2019.00466
Olek MJ. Multiple Sclerosis. Ann Intern Med. 2021;174(6):ITC81-ITC96.
Kesimpta [prescribing information]. East Hanover, NJ: Novartis Pharmaceuticals Corp; August 2020.
Cree BA, Mares J, Hartung HP. Current therapeutic landscape in
multiple sclerosis: an evolving treatment paradigm. Curr Opin Neurol. 2019;32(3):365-377.
Kesimpta patient website. Accessed January 12, 2022. https://www.kesimpta.com/about-kesimpta/see-the-results/
References
ANDREW WOO, M.D., PH.D.
JENNIFER
10.
11.
12.
13.
14.
Novartis Pharmaceuticals Corporation
East Hanover, New Jersey 07936-1080 © 2022 Novartis 3/22 183889
1,2
3,4
5,6
7
3,8,9
10
11
12
12*†
14
12
Jennifer has a type of MS called relapsing MS (RMS), which involves relapses and remissions (periods of partial or complete recovery). In MS, the immune system fights against myelin, the insulation protecting nerve fibers in the central nervous system. RMS is the most common type of MS and is often diagnosed in women between the ages of 20 and 40. Common symptoms may include unexplained numbness, pain, fatigue, and impaired coordination, and they can come without warning and disappear just as quickly.
Nevertheless she was determined to not let her symptoms get in the way of her full life and forged on.
RMS is often called an invisible disease because many people who have it show few outward signs of the challenges they’re living with every day. While
Jennifer downplayed her symptoms and periodic relapses, too. “Somebody might ask, ‘Are you okay?’ and I’d say, ‘Yeah, I’m fine.’ But in reality, you feel like you’ve been hit by a cement truck,” Jennifer says. “I tried to hide things as much as I could. I didn’t want to miss anything or let anyone down.”
In fact, she worked so hard at minimizing the physical and mental challenges of her RMS, she tried to convince herself everything was okay—when it really wasn’t.
“I was like, ‘Okay, enough,’” says Jennifer. “I’m working so hard I don’t have time to keep relapsing. Something has to change.”
So it did. Together with a neurologist who specialized in MS, Jennifer changed the treatment she had been on the past 15 years. And together, they made an educated decision to begin a path that would help her.
Conversely, some when diagnosed with RMS fear the worst—that they won’t be able to keep up with their busy lives or that they’ll be confined to a wheelchair. And such anxieties can prevent them from consulting MS experts or
“I just completed a mini-triathlon and finished in the top 10 in my age group. I can’t tell you what that means to me. So, it’s been amazing.”
Today, Jennifer no longer feels like she has to compromise her own well-being to avoid letting people down. And she advocates for herself and others. “I want people to know that an RMS diagnosis is not the end of your life and that if something’s not working, it’s okay to try something different,” says Jennifer. She encourages fellow patients to seek the right lifestyle and treatment for them. “You shouldn’t deal with feeling ‘just okay’ and saying, ‘I’m fine,’ even when things are rough. Find your support crew, read the studies, ask your doctor questions, and don’t be afraid to have that conversation with your doctor about advocating for a better you.”
This compares administration time of the infusion or injection. It does not reflect the total time required for each treatment, which includes pre- and post-administration time.
KLAUS VEDFELT
1.
2.
3.
4.
5.
6.
7.
8.
9.
4,5
13
†
®
Dr. Woo is a consultant for Novartis.
Created by Women's Health for
For more information on Kesimpta, please visit www.kesimpta.com.
Living With MS: Asking for Help Is a Sign of Strength
“Okay, enough!”
“From the comfort of your own home.”
“I just completed a mini triathlon!”
“Have that conversation with your doctor.”
After years of feeling “just okay,” Jennifer found an effective treatment—and a path back to doing what she loves.
An education consultant in Texas, Jennifer was active, busy, and very happy in her 20s. She enjoyed running in her free time and traveled for her job, which she found rewarding. Yet she felt there was something off. As it turns out she was right. At 25, Jennifer was diagnosed with multiple sclerosis (MS). And she was shocked. She was young and healthy. How could this be?
Nevertheless she was determined to not let her symptoms get in the way of her full life and forged on.
Jennifer’s career was going great—she earned advanced degrees and was even a guest lecturer at an elite university—few of her colleagues knew the extent of her battle. Even some friends and family were in the dark.
Jennifer downplayed her symptoms and periodic relapses, too. “Somebody might ask, ‘Are you okay?’ and I’d say, ‘Yeah, I’m fine.’ But in reality, you feel like you’ve been hit by a cement truck,” Jennifer says. “I tried to hide things as much as I could. I didn’t want to miss anything or let anyone down.”
In fact, she worked so hard at minimizing the physical and mental challenges of her RMS, she tried to convince herself everything was okay—when it really wasn’t.
Then, a few years ago, Jennifer noticed more prominent symptoms, including numbness in her legs. While she tried to push through, her symptoms continued to worsen, and her next MRI showed new lesions—indications that her condition was progressing and her initial treatment was no longer keeping her RMS in check.
“I was like, ‘Okay, enough,’” says Jennifer. “I’m working so hard I don’t have time to keep relapsing. Something has to change.”
So it did. Together with a neurologist who specialized in MS, Jennifer changed the treatment she had been on the past 15 years. And together, they made an educated decision to begin a path that would help her.
asking about other treatment options. Medical breakthroughs have greatly improved the prognosis for people living with RMS—including more than 20 currently available medications for treating MS, Dr. Woo notes. So it’s key to talk with your doctor, whether you are newly diagnosed or notice your current treatment may no longer doing the job.
“[My doctor] said, ‘I think this is something that’s going to work well for you.’…And he was right.” She self-administers the medication at home once a month after three weekly starter doses. In clinical studies, conducted by the manufacturer, Kesimpta reduced the RMS activity you see (relapses and disability progression) and the activity you don’t (lesions on MRI scans). Kesimpta also demonstrated an overall safety profile similar to teriflunomide, an oral treatment for RMS. High efficacy, demonstrated safety, and the patient’s routine are all important considerations for patients and their neurologists to discuss as they evaluate different treatment options and come to a decision together.
Dr. Woo emphasizes that RMS patients have more tools and treatment options than five or 10 years ago. “In my opinion, there’s something for every type of RMS and every type of person, depending on their lifestyle, goals, and medical history."
In addition to balanced eating, Jennifer credits her close group of family, friends, and others in the MS community for helping her live well. Sharing her experiences was an important part of her journey. And their encouragement helped her overcome her reflex of acting like everything was fine—and finally get the care she needed.
Today, Jennifer no longer feels like she has to compromise her own well-being to avoid letting people down. And she advocates for herself and others. “I want people to know that an RMS diagnosis is not the end of your life and that if something’s not working, it’s okay to try something different,” says Jennifer. She encourages fellow patients to seek the right lifestyle and treatment for them. “You shouldn’t deal with feeling ‘just okay’ and saying, ‘I’m fine,’ even when things are rough. Find your support crew, read the studies, ask your doctor questions, and don’t be afraid to have that conversation with your doctor about advocating for a better you.”
*As per stability technical specification data, when the patient is ready to inject, it typically takes less than 1 minute a month to administer. Initial dosing period consists of 20 mg subcutaneous doses at weeks 0, 1, and 2. Subsequent once monthly dosing. Please see Instructions for Use for more detailed instructions on preparation and administration of Kesimpta.
This compares administration time of the infusion or injection. It does not reflect the total time required for each treatment, which includes pre- and post-administration time.
Dr. Woo is a consultant for Novartis.
References
National Multiple Sclerosis Society. Relapsing-remitting MS (RRMS). Accessed February 25, 2022. https://www.nationalmssociety.org/What-is-MS/Types-of-MS/Relapsing-remitting-MS
Guthrie E. Multiple sclerosis: a primer and update. Adv Studies Pharm. 2007;4(11):313-317.
Trip SA, Miller DH. Imaging in multiple sclerosis. J Neurol Neurosurg Psychiatry. 2005 Sep;76 Suppl 3(Suppl 3):iii11-iii18.
Mayo Clinic. Multiple sclerosis: symptoms & causes. Accessed February 25, 2022. https://www.mayoclinic.org/diseases-conditions/multiple-sclerosis/symptoms-causes/syc-20350269
Multiple Sclerosis International Federation. Atlas of MS 2013. Accessed February 25, 2022. http://www.msif.org/wp-content/uploads/2014/09/Atlas-of-MS.pdf
National Multiple Sclerosis Society. MS signs & symptoms. Accessed February 25, 2022. https://www.nationalmssociety.org/Symptoms-Diagnosis/MS-Symptoms
Lakin L, Davis BE, Binns CC, Currie KM, Rensel MR. Comprehensive Approach to Management of Multiple Sclerosis: Addressing Invisible Symptoms-A Narrative Review. Neurol Ther. 2021;10(1):75-98.
Kurtzke JF. Rating neurologic impairment in multiple sclerosis: an expanded disability status scale (EDSS). Neurology. 1983 Nov;33(11):1444-52.
Kappos L, Butzkueven H, Wiendl H, et al. Greater sensitivity to multiple sclerosis disability worsening and progression events using a roving versus a fixed reference value in a prospective cohort study. Mult Scler. 2018;24(7):963-973.
Gaitán MI, Correale J. Multiple Sclerosis Misdiagnosis: A Persistent Problem to
Solve. Front Neurol. 2019;10:466. Published 2019 May 7. doi:10.3389/fneur.2019.00466
Olek MJ. Multiple Sclerosis. Ann Intern Med. 2021;174(6):ITC81-ITC96.
Kesimpta [prescribing information]. East Hanover, NJ: Novartis Pharmaceuticals Corp; August 2020.
Cree BA, Mares J, Hartung HP. Current therapeutic landscape in
multiple sclerosis: an evolving treatment paradigm. Curr Opin Neurol. 2019;32(3):365-377.
Kesimpta patient website. Accessed January 12, 2022. https://www.kesimpta.com/about-kesimpta/see-the-results/
Novartis Pharmaceuticals Corporation
East Hanover, New Jersey 07936-1080 © 2022 Novartis 3/22 183889
10.
11.
12.
13.
14.
1.
2.
3.
4.
5.
6.
7.
8.
9.
For more information on Kesimpta, please visit www.kesimpta.com.
Jennifer has a type of MS called relapsing MS (RMS), which involves relapses and remissions (periods of partial or complete recovery). In MS, the immune system fights against myelin, the insulation protecting nerve fibers in the central nervous system. RMS is the most common type of MS and is often diagnosed in women between the ages of 20 and 40. Common symptoms may include unexplained numbness, pain, fatigue, and impaired coordination, and they can come without warning and disappear just as quickly.
RMS is often called an invisible disease because many people who have it show few outward signs of the challenges they’re living with every day. While
“It’s common for people with RMS to hesitate to ask for help,” says Andrew Woo, M.D., Ph.D., a neurologist at Santa Monica Neurological Consultants in California. “Initial signs might be mild, or wax and wane, so people don’t always get them checked out,” he says. As a result, the RMS can go undiagnosed for months or even years.
Conversely, some when diagnosed with RMS fear the worst—that they won’t be able to keep up with their busy lives or that they’ll be confined to a wheelchair. And such anxieties can prevent them from consulting MS experts or
MAR 30, 2022
JENNIFER
Consulting with an MS specialist was a turning point for Jennifer. With the help of the neurologist, she started a treatment called Kesimpta (ofatumumab), the first and only self-administered B-cell injection therapy for people living with RMS. “Kesimpta is what’s considered a high-efficacy therapy, based on their data,” says Dr. Woo. Kesimpta is a targeted and precisely delivered B-cell therapy that takes one minute a month when the patient is ready to administer. "You can do it from the comfort of your own home.”
ANDREW WOO, M.D., PH.D.
With the consult of her doctor and other lifestyle changes, Jennifer has been able to continue doing the things she loves, such as running.
“I just completed a mini-triathlon and finished in the top 10 in my age group. I can’t tell you what that means to me. So, it’s been amazing.”
JENNIFER
KLAUS VEDFELT
JENNIFER
1,2
7
3,8,9
10
11
12
13
®
12*†
14
12
†
3,4
4,5
5,6
Created by Women's Health for
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