A web-blog (formerly known as Stu's Views and MS News), now published by MS Views and News, a patient advocacy organization. The information on this blog helps to Empower those affected by Multiple Sclerosis globally, with education, information, news and community resources.
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Spring has sprung! As I look around, Mother Earth is in bloom. Trees are sprouting new leaves, plants are growing, and the grass is green once again. I love spring and all that it represents — hopes for new birth and rebirth. For those who are unaware, May is Mental Health Awareness Month.
I write this week to encourage those who are battling and surviving mental illness and any related disorders. It serves to urge everyone to actively recognize the warning signs of someone in need of assistance. This column is a call to action to offer support, empathy, a safe environment, and to eradicate stigma.
The National Alliance on Mental Illness (NAMI) reports that one in five adults in the U.S. experience a mental illness, and one in 25 adults live with a serious mental illness. Mental health continues to be an issue that is under-discussed, undertreated, and often ignored. However, there are warning signs.
My experiences of having MS and heart disease have introduced me to depression and anxiety. From my window seat, my eyes opened to the struggle that many people face on a daily basis. I have vowed to learn about mental health disorders, speak openly about them, share my personal experience, get acquainted with available resources, and offer encouraging words.
On my journey as a heart health and MS advocate, I have met people who struggle, survive, and thrive with mental illness. I have realized that there is one commonality that we possess, which is to know that we matter. We need to know that someone cares and that they hear our voices. There is a desire to feel that we have value and the longing to feel that life, in all of its tragedy and turmoil, is really worth living.
A formulation of ofatumumab (brand name Arzerra) to be injected under the skin (subcutaneous) was found to be safe and effective in the treatment of relapsing-remitting multiple sclerosis (RRMS), even when given at lower doses compared with Arzerra, which is administered intravenously, according to the results of a Phase 2 trial.
Besides offering the possibility of self-administration by the patient, treatment with subcutaneous ofatumumab was seen to effectively reduce the number of brain lesions without leading to severe depletion of immune B-cells, one of the consequences of treatment with intravenous Arzerra.
Ofatumumab is a human monoclonal antibody targeting the CD20 molecule, which is found on the surface of B-cells or lymphocytes — key cells of the immune system also implicated in the development of multiple sclerosis.
Arzerra is currently the only approved ofatumumab formulation, indicated for the treatment of chronic lymphocytic leukemia (CLL), a blood cancer that typically develops in B-cells.
By targeting CD20, ofatumumab is able to direct the body’s immune system to fight both normal and cancerous B-cells. The medication is marketed and developed by the Danish biotech company Genmab, under a development and commercialization agreement with Novartis.
Driving is an important task to help MS patients maintain the activities of daily living, including their independence, social interactions and access to work, healthcare, family and shopping.
However, MS is associated with physical, sensory and cognitive disabilities, like muscle spasticity or visual and auditory impairment, that may affect the daily living functions of patients.
Some MS treatments also are known to negatively affect the driving ability of patients. Disease-modifying drugs (DMDs), corticosteroids, and other medicines used to manage symptoms like depression, anxiety, pain and muscle spasticity, affect patients’ driving performance, including wakefulness, coordination, reaction times, and concentration.
Additionally, Julie will be presenting at the MS Views and News educational program on May 29th at the Nashville Marriott Airport, as showing here. to attend this event, RSVP here.
Roberts, diagnosed with MS while making her second recording in 2005, will also attend #CMSC sessions to learn more about potential and current treatments, and ongoing research in the disease. The conference runs from May 30 to June 2 in Nashville.
She is set to perform at the meeting’s opening John F. Kurtzke Memorial Lecture and Luncheon on Wednesday, and again at its awards reception on Friday, June 1.
Her first single, “Break Down Here,” was a Billboard Top 20 Hot Country Song and she has sold millions of albums.
Roberts says she met her diagnosis with years of denial, refusing to pursue any treatment.
“I thought if I ignored my MS it would go away,” she said in a press release. Then another disaster struck.
Record-shattering rainfall flooded Nashville in early May 2010, inundating the Roberts family home and killing 26 people across Tennessee and neighboring Kentucky. Roberts and her family were rescued by boat, after frightening hours that led to an awakening.
“The flood rescue made me realize that I needed to manage my MS, adopt a healthy and positive lifestyle, and show others that the disease does not define who you are or stop you from pursing your dreams,” she said.
She now encourages patients to find a neurologist and healthcare team they trust and feel comfortable with to ensure the care they need.
“Julie Roberts is living proof of the mission of the CMSC and its Annual Meeting – to present MS healthcare teams with the latest information and tools to provide optimum care to those living with MS,” said June Halper, chief executive officer of CMSC. “We are excited to have Julie at our conference to entertain and share her MS journey with our attendees.”
In Roberts’ latest album, “I Think You Know,” produced by Shooter Jennings, she sings about love, loss, roots, and redemption. She also has a biography, “Beauty in the Breakdown, Choosing to Overcome,” set for release in September.
Receiving a multiple sclerosis (MS) diagnosis can leave you feeling overwhelmed and scared. But it’s important to remember that you’re not alone. The Multiple Sclerosis Foundation estimates that there are more than 2.5 million people living with MS around the world.
It’s normal to have a lot of questions about your new diagnosis. Getting your questions answered and learning about your condition can help you feel more at ease.
Here are some questions to ask your doctor during your next appointment.
What Symptoms Will I Experience?
Chances are, it was your symptoms that helped your doctor diagnosis you in the first place. Not everyone experiences the same symptoms, so it can be difficult to predict how your disease will progress or exactly what symptoms you will feel. Your symptoms will also depend on the location of the affected nerve fibers.
Common signs and symptoms of MS include:
numbness or weakness, usually affecting one side of the body at a time
painful eye movement
vision loss or disturbances, usually in one eye
tingling or “prickly” sensation
electric shock sensations, often when moving the neck
dizziness or vertigo
bowel and bladder issues
While the exact course of your disease can’t be predicted, 85 percent of those with MS have relapsing-remitting multiple sclerosis (RRMS). RRMS is characterized by a relapse of symptoms followed by a period of remission that can last months or even years. These relapses are also called exacerbations or flare-ups.
What Are My Treatment Options?
There’s currently no cure, but there are many effective medications available to treat MS. The three main goals for treatment are to:
modify the disease course by slowing MS activity for longer periods of remission
treat attacks or relapses
Disease-modifying therapies (DMTs) approved by the Food and Drug Administration can effectively decrease the number of relapses and slow progression of your disease. Some DMTs are given by a medical professional through an intravenous infusion, while others are given by injection at home.
New approval for Gilenya (fingolimod) addresses strong unmet need for younger patients, who often experience more frequent relapses than adults with multiple sclerosis (MS)(1)
- In a landmark controlled Phase III study of children and adolescents (ages 10 to less than 18) with relapsing forms of MS (RMS), Gilenya reduced the annualized relapse rate by approximately 82% vs. interferon beta-1a injections (p< 0.001)(2)
- Gilenya is the most prescribed oral once-daily MS disease-modifying treatment, with a global exposure of more than 231,000 patients since its initial approval for adults with RMS(3)
EAST HANOVER, N.J., May 11, 2018 /PRNewswire/ -- Novartis today announced that the US Food and Drug Administration (FDA) has approved Gilenya® (fingolimod) for the treatment of children and adolescents 10 to less than 18 years of age with relapsing forms of multiple sclerosis, making it the first disease-modifying therapy indicated for these patients2.
This approval expands the age range for Gilenya, which was previously approved for patients aged 18 years and older with RMS. Gilenya was granted Breakthrough Therapy designation by the FDA in December of 2017 for this pediatric indication.
"We now finally have an FDA-approved treatment for children and adolescents with relapsing MS," said Dr. Brenda Banwell, Chief of the Division of Neurology at Children's Hospital of Philadelphia, who served as co-Principal investigator of the pivotal study that supported the pediatric approval. "Repeated relapses are more common in young people with MS than in adults, so this is heartening news for patients and their families."
Many people with MS experience episodes of dizziness, which can make you feel lightheaded or off-balance. Some also have episodes of vertigo. Vertigo is the false sensation of whirling or spinning of yourself or the world around you. According to one report, about 20 percent of people with MS experience vertigo.
Dizziness and vertigo contribute to balance problems, which are common in people with MS. Ongoing dizziness and vertigo can interfere with daily tasks, increase the risk of falls, and can even become disabling.
Vertigo is an intense sensation of spinning, even if you’re not moving. It’s similar to what you feel on a twirling amusement park ride. The first time you experience vertigo can be very unsettling, even frightening.
Vertigo may be accompanied by nausea and vomiting. It can continue for hours, or even days. Sometimes, dizziness and vertigo are accompanied by vision problems, tinnitus or hearing loss, or trouble standing or walking.
Causes of dizziness and vertigo in MS
The lesions that result from MS make it difficult for nerves within the central nervous system to send messages to the rest of the body. This causes MS symptoms, which vary according to the location of the lesions. A lesion or lesions in the brain stem or cerebellum, the area of the brain that controls balance, may cause vertigo.
Vertigo can also be a symptom of a problem with the inner ear. Other possible causes of dizziness or vertigo include certain medications, blood vessel disease, migraine, or stroke. Your doctor can help you rule out other possible causes of vertigo.
MS Patient Story
Written By: Cathy Chester - An Empowered Spirit
I never intended to share so much of myself with readers when I first created An Empowered Spirit, to reveal my hidden feelings, experiences, hopes, and dreams. I know it’s something good writers are supposed to do but it was difficult for me. Then I read a book that forever changed me, Elizabeth Lesser’s “Broken Open.” Her words gave me the courage to be frank, open and honest in my writing. In return, I’ve been rewarded with readers who tell me that my work as a health advocate has helped them feel less alone, more empowered and forever grateful.
“Every catastrophe can hand us exactly what we need to awaken into who we really are.” ~Elizabeth Lesser
I’m about to break myself open again for a good reason.
I recently relocated to a new area of N.J. where I know almost no one. Being a freelance writer can be a lonely profession, so in my quest to meet new people I joined a wonderful organization called B.I.G. (Believe Inspire Grow) whose mission is, among other things, to help women live the way they were meant to live by providing inspiration, tools, community, and a whole lot more. I’ve met many wonderful, inspiring women and attended some fascinating and informative presentations.
The new guideline aims to help clinicians choose among as many as two dozen potential therapies which, it is hoped, will delay disease progression, and help more patients avoid fearsome consequences like severe disability and reduce life expectancy. But doctors also face the challenge of limited follow-up for many of these drugs, one of which was recently voluntarily removed from the market due to side effects.
A new practice guideline published by the American Academy of Neurology on April 23 attempted to sort out recommendations among an explosion of drugs for multiple sclerosis which are considered to be disease-modifying therapies (DMTs) which have been approved in recent years. The guideline, which discussed clinical questions such as choice of therapies, as well as strategies including switching or stopping DMTs, was published during the Academy’s annual meeting in Los Angeles.
The guideline discussed 17 FDA-approved medications, and also made a weak recommendation regarding off-label use of six other drugs. (Patients may also have to take other drugs to treat their symptoms, which DMTs are not intended to address).
The cornucopia of new medications, at least seven of which have only been approved since 2010, has its origin in immune strategies.
“If you trace it back to the very first FDA-approved medicine, interferon in 1993, the scientists knew MS had something to do with the immune system,” said Alexander Rae-Grant, MD, professor of medicine at the Cleveland Clinic Lerner College of Medicine, and lead author on the article.
Another older drug, glatiramer acetate, was approved in 1996. “It is like a molecular mimic; it confuses the immune system into attacking the medicine, because it looks like myelin,” the substance that surrounds nerve cells, said Rae-Grant. “We know everything there is to know about that medicine.
“Since then, we’ve become much more targeted in our approach, and we’ve adapted some medications used in cancer populations, as well as rheumatology,” he added.
Head-to-Head Clinical Trials Urgently Needed
But much less is known about some of the newer medications, leading the members of the guideline committee to make recommendations about the need for clinical trials in areas like comparative effectiveness and pregnancy-related issues. And prior to just last year, with the approval of ocrelizumab, there was no DMT for the primary progressive form of MS. (A classification system for several varieties of MS was revised in 2016).
The uncertainty some clinicians may experience is illustrated by the voluntary withdrawal from the market of one drug, daclizumab, which was initially referred to in the guideline, according to Rae-Grant (daclizumab was first approved in 1997 for transplant patients).
Neurologists are hopeful that the new therapies will be life-changing for some patients. Perhaps the most feared consequences of MS are severe disability and a somewhat reduced life expectancy.
“It used to be that about half of the patients would not be able to walk independently after about 25 years. But we don’t have a lot of long-term data on the MS population,” noted Rae-Grant.
“If we go back to earliest therapies, some cohorts have been followed for 20 years. But some of the new DMTs have only been available for two-to-five years, and disease progression is typically measured by relapses which occur over two to three years,” explained Ruth Ann Marrie, MD, PhD, professor at the University of Manitoba in Winnipeg, and co-author on the article. “So it’s difficult to say what a new therapy is going to do for somebody 20 years from now.”
But neurologists are hopeful that patients will experience some long-term benefits, including a delay of progression. In determining how to do that, the experts debated questions like whether to prescribe the strongest therapies first, or to switch to them if less potent drugs stop working.
Simple gestures such as picking up the phone, walking, eating, and drinking require messages from the brain to the muscles and nerves. Messages throughout the body are sent via nerve synapses. When these synapses are unable to connect, the messages fail.
Nerves are protected by a fatty myelin sheath. As MS attacks and progresses, it destroys these sheaths and leaves the body vulnerable.
MS can be a progressive disease and its course can be ruthless.
Once the damage is done, there’s been no hope of reversal. But now this recent look at growing myelin shows some potential for humans.