U.S. - FDA Approves Bristol Myers Squibb’s ZEPOSIA® (Ozanimod), a New Oral Treatment for Multiple Sclerosis

In clinical trials, ZEPOSIA demonstrated efficacy on a key clinical marker of disease activity – annualized relapse rate (ARR) – as compared to AVONEX ® (Interferon Beta-1a)1 ,2,3
ZEPOSIA is a sphingosine-1-phosphate (S1P) receptor modulator that requires no label-based first dose observation 1
ZEPOSIA adds to Bristol Myers Squibb’s legacy immunology franchise and marks the first FDA-approved New Drug Application since the Celgene acquisition

PRINCETON, N.J.--(BUSINESS WIRE)--Bristol-Myers Squibb Company (NYSE: BMY) today announced that the U.S. Food and Drug Administration (FDA) approved ZEPOSIA® (ozanimod) 0.92 mg for the treatment of adults with relapsing forms of Multiple Sclerosis (RMS), including Clinically Isolated Syndrome, relapsing-remitting disease, and active Secondary Progressive disease.1 ZEPOSIA, an oral medication taken once daily, is the only approved sphingosine-1-phosphate (S1P) receptor modulator that offers RMS patients an initiation with no genetic test and no label-based first-dose observation required for patients.1,4,5 An up-titration scheme should be used to reach the maintenance dosage of ZEPOSIA, as a transient decrease in heart rate and atrioventricular conduction delays may occur.1

“With the FDA approval of ZEPOSIA, appropriate patients with relapsing forms of Multiple Sclerosis will have another oral treatment option with meaningful efficacy to help address the disease’s hallmark relapses and brain lesions,”9 said Samit Hirawat, M.D., chief medical officer, Bristol Myers Squibb. “ZEPOSIA has substantial clinical potential, and we are well positioned with our heritage in transformational science to ensure this innovative compound ultimately benefits as many patients as possible.”

The approval is based on data from the largest pivotal, head-to-head RMS studies with an active comparator to date: the randomized, active-controlled Phase 3 SUNBEAM™ (safety and efficacy of ZEPOSIA versus Interferon Beta-1a in relapsing Multiple Sclerosis) and RADIANCE™ (safety and efficacy of the selective sphingosine 1-phosphate receptor modulator ZEPOSIA in relapsing Multiple Sclerosis) Part B clinical trials of more than 2,600 adults.1,2,3,10 In both trials – as compared to AVONEX® (Interferon Beta-1a), ZEPOSIA delivered powerful efficacy as measured by annualized relapse rate (ARR), as well as on the number and size of brain lesions.1,2,3

As the country’s healthcare system is dealing with the unprecedented COVID-19 pandemic, Bristol Myers Squibb has made the decision to delay commercialization of ZEPOSIA. The Company made the decision based on what’s in the best health interest of our patients, customers and employees. Bristol Myers Squibb will continue to monitor the environment and will partner with the neurology community to inform launch timing.


Many Should Appreciate Bristol Myers Squibb for their empathy toward ti current health crisis and holding off on the launch their first MS medication




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On Recklessness and the Coronavirus - What it’s like to be immunocompromised during a pandemic.

By Sharma Shields ---  March 25, 2020
MS. Shields is a fiction writer. - 


SPOKANE, Wash. — It’s likely I’ve always been this way, reckless with fear.

Even as a child I dived right into what terrified me, the dark basement, the cobwebbed underbrush. When I was told that I had Multiple Sclerosis almost seven years ago, I wanted to rush into the future and pull it down like rotten timber all around me. I was angry to be stuck in the present, with these common primary symptoms: numb feet, tingling legs, a fatigue I wore like a gown carved from stone.

It was infuriating not to know what could come next. Would I lose my ability to care for my children? Would I wind up bedridden, an invalid? I wanted to experience the whole course of my disease in one brutal stroke. I ached for control.As the coronavirus began to circle eastern Washington State, I was again gripped by the nail-biting unknowability of all that would come to pass. I considered writing a casual social media post, Any peeps with Covid-19 want to share a fondue? An email blast: All those with fevers, dry coughs, etc., are invited to my house for hot yoga in a windowless room. Or maybe a short drive to the hospital, where I could slip into the E.R. and rub my face against the pale blue privacy curtains.  

I know this sounds bonkers. These were irrational desires — the feeling that getting sick was the only way to stop worrying about getting sick.
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When the news came of school closures, my husband’s concern spilled over. He told me, bravely, “I don’t think you should go to work.”

I work in a small children’s bookstore called Wishing Tree Books: Pretty shelves, cheerful lilac walls, a sun-bright stained-glass window. Going to work calms my anxiety. The books sing quietly to me with their humming, word-stippled potential. The thought of losing this space upset me. The shop opened only in November. If everyone stayed home, how would this new small business — magical as it is — survive?

My husband stewed. Usually I’m the one stuck in an anxiety spiral and he’s the one who guides me out of it. This role reversal meant one thing: that what he asked of me was sensible, necessary, even, but I bucked against it, scowling.

“I’ll keep my distance from the customers. There are disinfectant wipes and hand sanitizer.” “You just had an infusion,” he reminded me.

“I’ll be careful,” I said, and the very thought of needing to be careful stoked my anger. I wanted to lick the counter-tops, nose the doorknobs.
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Society-Supported Researchers Target Bile Acid Metabolism in People with MS: Clinical Trial Underway

March 23, 2020
Researchers at Johns Hopkins University report that levels of bile acids (produced by the liver to help the absorption of fats in the gut and other processes) may be reduced in people with MS, and especially in people with progressive MS. The team provides evidence that docking sites for these bile acids in brain cells are altered in people with MS; that bile acid signaling appears to reduce inflammatory activity of specific cells in the brain; and that administering bile acid supplements to mice with MS-like disease reduces disease severity. This team is now conducting a trial, funded by the National MS Society, of bile acid supplements in 60 people with progressive MS.


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People with MS may have abnormalities in the way they process energy and other maintenance activities (metabolism). One metabolic pathway identified by this team is bile acid metabolism. Bile acids can influence the composition of gut bacteria. Abnormalities in gut bacteria have been identified in people with MS and may be related to the observed abnormalities in bile acid metabolism.Bile acids can also interact with immune cells and brain cells and influence their function. In this study, the investigators examined tissue obtained from people with MS via autopsy, and found docking sites for bile acids on brain and immune cells, indicating that bile acids may modulate inflammation in the nervous system. The team administered a bile acid to cells isolated in lab dishes and found that it succeeded in blocking cells from promoting inflammation.Authors Drs. Pavan Bhargava and Kathryn Fitzgerald are funded by Career Transition Fellowships from the National MS Society.“Bile acid metabolism is altered in multiple sclerosis and supplementation ameliorates neuroinflammation” is published by Dr. Pavan Bhargava (Johns Hopkins University) and colleagues in The Journal of Clinical Investigation.


Article first published here



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9 Resources to Cope with Coronavirus Anxiety

You really don’t need to check the CDC’s website again. You probably do need a break, though.
Take a breath and give yourself a pat on the back. You’ve successfully managed to look away from breaking news long enough to find some resources that might actually help with your stress.
That’s no easy thing right now.
Experts are recommending social distancing and self-quarantine to help prevent the spread of the new coronavirus disease (COVID-19), sending most of us into isolation.
It makes sense if you haven’t been doing much at all except ruminating on updates about the virus and the availability of toilet paper.
So what can you do about your coronavirus anxiety?
I’m glad you asked, because I’ve collected a whole list of tools to help your mental health during the COVID-19 scare.
This list could also apply to any moment when breaking news headlines are all-consuming and hard to look away from.
Think of it this way: Reducing your stress is actually one of the best ways you can deal with this crisis. Too much stress can hurt your immunity and your mental health.
Plus, you just plain deserve to finally feel some relief after spiraling through your anxieties for this long.

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First things first: There’s nothing wrong with you for feeling anxious right now.
Ignoring the stress or judging yourself for feeling it is tempting, but it probably won’t help in the end.
Acknowledging your feelings — even if they’re scary — can help you cope in a healthy way.
And I’ve got news for you: You’re not the only one who’s freaking out. The news is legitimately frightening, and fear is a normal, natural response.
You’re not alone.
If you’re already living with a chronic illness, then COVID-19 might be especially frightening. And if you’re living with a mental illness such as an anxiety disorder, then the constant barrage of headlines might have you on the edge of feeling like you’re losing control.
There are plenty of resourcesTrusted Source out there about how to directly deal with coronavirus anxiety, and it’s important to have those strategies in your toolbox when you need them.
But for this list, we’re going to take a break from all of that.
Because science shows that taking a breather can help interrupt your anxiety, reduce your levels of the stress hormone cortisol, and even retrain your brain to change unhelpful thinking patterns.
Which is all the more reason to be proud of yourself for ending up here, where all you have to do is sit back, click through some helpful tools, and finally take a break from that haunting sense of impending doom.
These tools alone aren’t going to fix everything, and it’s a good idea to reach out for professional help if you’re really struggling to keep your anxiety under control.
But I hope these apps and websites can give you a moment to break the cycle of headline stress, if even for a moment.
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UPDATED information: The coronavirus and MS – What You need to know - ALL MS Patients need to Read this message

UPDATED information: The coronavirus and MS – What You need to know - ALL MS Patients need to Read this message
Last updated: 13th March 2020


 

Global COVID-19 advice for people with MS
  provided by: MS International Federation

COVID-19 is a new illness that can affect your lungs and airways. It is caused by a novel coronavirus that was first detected in people in China in December 2019 and has since spread to other parts of the world.
There is currently no evidence on how COVID-19 affects people with Multiple Sclerosis (MS). The advice below was developed by MS neurologists and research experts from MSIF’s member organisations. Click here to download the full statement including the list of consulted individuals and organisations.
This advice will be reviewed and updated as evidence about COVID-19 becomes available.

Advice for people with MS

People with underlying lung and heart conditions and those aged over 60 years are more likely to experience complications and become severely ill with the COVID-19 virus. This group will include many people living with MS, especially those with additional health complications, mobility issues and those taking some MS treatments.
All people with MS are advised to pay particular attention to guidelines for reducing the risk of infection with COVID-19. Older people with MS, especially those who also have lung or heart diseases should take extra care to minimise their exposure to the virus. The World Health Organization recommendations include:
Wash your hands frequently with soap and water or an alcohol-based hand rubAvoid touching your eyes, nose and mouth unless your hands are cleanTry to keep at least 1 metre distance between yourself and others, particularly those who are coughing and sneezingWhen coughing and sneezing, cover your mouth and nose with a flexed elbow or tissuePractise food safety by using different chopping boards for raw meat and cooked foods and wash your hands between handling them.
In addition, we recommend that people with MS should:
Avoid public gatherings and crowdsAvoid using public transport where possibleWhere possible, use alternatives to face-to-face routine medical appointments (for example, telephone appointments).
Caregivers and family members who live with, or regularly visit, a person with MS should also follow these recommendations to reduce the chance of bringing COVID-19 infection into the home.

Advice regarding disease-modifying therapies for MS

Many disease modifying therapies (DMTs) for MS work by suppressing or modifying the immune system. Some MS medications might increase the likelihood of developing complications from a COVID-19 infection but this risk needs to be balanced with the risks of stopping treatment. We recommend that:
People with MS currently taking DMTs continue with their treatment.
People who develop symptoms of COVID-19 or test positive for the infection discuss their MS therapies with their MS care provider or another health care professional who is familiar with their care.
Before starting on any new DMT, people with MS discuss with their healthcare professional which therapy is the best choice for their individual disease course and disease activity in light of COVID-19 risk in the region.
Those who are due to start on a DMT but have not yet done so, should consider selecting a treatment that does not reduce specific immune cells (lymphocytes). Examples include: interferons, Glatiramer Acetate, or Natalizumab. Medications that reduce lymphocytes over longer intervals include Alemtuzumab, Cladribine, Ocrelizumab and rituximab.
 The following oral DMTs may reduce the ability of the immune system to respond to an infection: Fingolimod, Dimethyl Fumarate, Teriflunomide and Siponimod. People should carefully consider the risks and benefits of initiating these treatments during the COVID-19 pandemic.
People with MS who are currently taking Alemtuzumab, Cladribine, Ocrelizumab, rituximab, Fingolimod, Dimethyl Fumarate, Teriflunomide or Siponimod and are living in a community with a COVID-19 outbreak should isolate as much as possible to reduce their risk of infection.
Recommendations on delaying second or further doses of Alemtuzumab, Cladribine, Ocrelizumab and rituximab due to the COVID-19 outbreak differ between countries. People who take these medications and are due for the next dose should consult their healthcare professional about the risks and benefits of postponing treatment.

Advice regarding aHSCT

Autologous Haematopoietic Stem Cell Treatment (aHSCT) includes intensive chemotherapy treatment. This severely weakens the immune system for a period of time. People who have recently undergone treatment should extend the period they remain in isolation during the COVID-19 outbreak. People who are due to undergo treatment should consider postponing the procedure in consultation with their healthcare professional.

Advice for children or pregnant women with MS

At this time there is no specific advice for women with MS who are pregnant. There is general information on COVID-19 and pregnancy on the US Centre for Disease Control and Prevention website.
There is no specific advice for children with MS; they should follow the advice above for people with MS.

More information from the World Health Organisation.

You can also find out the answers to some commonly asked questions about COVID-19 on the World Health Organization’s website.
Find out more about COVID-19 in the short informational video below, from the World Health Organization.


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From The CDC - Center for Disease Control : Coronavirus Disease 2019 (COVID-19)

Who is at higher risk?
Early information out of China, where COVID-19 first started, shows that some people are at higher risk of getting very sick from this illness. This includes:
Older adultsPeople who have serious chronic medical conditions like:Heart diseaseDiabetesLung disease

Get ready for COVID-19 now

Take actions to reduce your risk of getting sick
If you are at higher risk for serious illness from COVID-19 because of your age or because you have a serious long-term health problem, it is extra important for you to take actions to reduce your risk of getting sick with the disease.
Stock up on supplies.Take everyday precautions to keep space between yourself and others.When you go out in public, keep away from others who are sick, limit close contact and wash your hands often.Avoid crowds as much as possible.Avoid cruise travel and non-essential air travel.During a COVID-19 outbreak in your community, stay home as much as possible to further reduce your risk of being exposed.
Have supplies on hand
Contact your healthcare provider to ask about obtaining extra necessary medications to have on hand in case there is an outbreak of COVID-19 in your community and you need to stay home for a prolonged period of time.If you cannot get extra medications, consider using mail-order for medications.Be sure you have over-the-counter medicines and medical supplies (tissues, etc.) to treat fever and other symptoms. Most people will be able to recover from COVID-19 at home.Have enough household items and groceries on hand so that you will be prepared to stay at home for a period of time.
Take everyday precautions
Avoid close contact with people who are sick.
Take everyday preventive actions:
Clean your hands oftenWash your hands often with soap and water for at least 20 seconds, especially after blowing your nose, coughing, or sneezing, or having been in a public place.If soap and water are not available, use a hand sanitizer that contains at least 60% alcohol.To the extent possible, avoid touching high-touch surfaces in public places – elevator buttons, door handles, handrails, handshaking with people, etc. Use a tissue or your sleeve to cover your hand or finger if you must touch something.Wash your hands after touching surfaces in public places.Avoid touching your face, nose, eyes, etc.Clean and disinfect your home to remove germs: practice routine cleaning of frequently touched surfaces (for example: tables, doorknobs, light switches, handles, desks, toilets, faucets, sinks & cell phones)Avoid crowds, especially in poorly ventilated spaces. Your risk of exposure to respiratory viruses like COVID-19 may increase in crowded, closed-in settings with little air circulation if there are people in the crowd who are sick.Avoid all non-essential travel including plane trips, and especially avoid embarking on cruise ships.
If COVID-19 is spreading in your community
Take extra measures to put distance between yourself and other people to further reduce your risk of being exposed to this new virus.
Stay home as much as possible.Consider ways of getting food brought to your house through family, social, or commercial networks
If a COVID-19 outbreak happens in your community, it could last for a long time. (An outbreak is when a large number of people suddenly get sick.) Depending on how severe the outbreak is, public health officials may recommend community actions to reduce people’s risk of being exposed to COVID-19. These actions can slow the spread and reduce the impact of disease.
Have a plan for if you get sick
Consult with your health care provider for more information about monitoring your health for symptoms suggestive of COVID-19.Stay in touch with others by phone or email. You may need to ask for help from friends, family, neighbors, community health workers, etc. if you become sick.Determine who can care for you if your caregiver gets sick.
Watch for symptoms and emergency warning signs
Pay attention for potential COVID-19 symptoms including, fever, cough, and shortness of breath. If you feel like you are developing symptoms, call your doctor.If you develop emergency warning signs for COVID-19 get medical attention immediately. In adults, emergency warning signs*:Difficulty breathing or shortness of breathPersistent pain or pressure in the chestNew confusion or inability to arouseBluish lips or face
*This list is not all inclusive. Please consult your medical provider for any other symptoms that are severe or concerning.

What to do if you get sick

Stay home and call your doctor.Call your healthcare provider and let them know about your symptoms. Tell them that you have or may have COVID-19. This will help them take care of you and keep other people from getting infected or exposed.If you are not sick enough to be hospitalized, you can recover at home. Follow CDC instructions for how to take care of yourself at home.Know when to get emergency help.Get medical attention immediately if you have any of the emergency warning signs listed above.

What others can do to support older adults

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The Connection Between Depression and MS

When you have Multiple Sclerosis (MS), symptoms like fatigue, numbness, and weakness may be your main concern. But depression is a common symptom, too.
People with MS are up to two or three times more likely to become depressed than those without the condition. There are a few reasons why up to half of people with MS will experience depression at some point in their lives:
Nerve damage can affect the transmission of signals related to mood.Living with a chronic illness can cause stress and anxiety.Drugs like steroids and interferons that treat MS can cause depression as a side effect.
Often, depression is the one MS symptom that’s overlooked and left untreated. Here are a few tips to help you care for your mental health while managing your MS.

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1. Check your symptoms

Everyone feels down from time to time. A brief shift in your mood doesn’t necessarily mean you’re depressed. But if you’ve continuously been sad for two weeks or longer, it’s time to take a closer look.
Ask yourself these questions:
Do you always feel sad, hopeless, helpless, worthless, or empty?Are you more irritable than usual? Do you snap at the people around you?Have you lost interest in things you once loved to do? Does nothing you do seem to excite you?Do you feel extra tired or drained of energy?Do you have trouble sleeping, or sleep too much?Do you have difficulty concentrating or remembering?Do you notice strange aches and pains that you can’t connect to a physical cause?Have you noticed any changes in your appetite? Either eating too much or too little?
If you’ve had any of these symptoms, call your doctor or a mental health professional for help.

2. Talk to your doctor


If you think you’re depressed, tell your primary care doctor. Just as with other conditions, there are medications and alternative therapies available to help you feel better. Also, inform the specialist who treats your MS. It’s possible that a change in your MS medication could be enough to improve your mood.
It’s also helpful to talk to a mental health expert like a psychologist, psychiatrist, or counselor. They can offer strategies to help you cope better with the stresses of your condition. Ideally, find someone who has experience working with people who have chronic conditions like MS.


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The Importance of Getting Out of the House Cannot Be Overstated

When multiple health problems pile up, it’s natural to want to hibernate, but it can get lonely and boring! 
Learn how the blogger Trevis Gleason finds a workaround to staying home.

It can sometimes be too easy to sequester oneself, but it’s so important not to.
Last Updated: March 06, 2020

I had a physiotherapy appointment recently, and as I rode in the car, I noted aloud how green the pastures and fields had become. Then I started to think back and realized that since I’d been released from the hospital on December 21, I hadn’t been more than 2 miles from our home.
Multiple sclerosis (MS) and other health mangles have wrung me nearly dry since that Christmas clemency, so it was both easy and rather required that I stay close to base. But even in a state of doubled fatigue, I was acquiring a moat between Milltown Cottage and even our closest neighbors.
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There’s Only So Much Online Solitaire One Can Play

I did have to amend my first recollection, as I had been further afield than 2 miles. That one time, however, we were away before light for a follow-on procedure under general anesthetic and home well after dark in a drug-induced haze, so I could be excused for my lack of memory of that trip.
Add to this the fact that my wife has recently taken on extra days of work to cover someone’s maternity leave, and my situation was teetering toward desperate. My mind was turning to mush; my ear for the lyric, local accent was beginning to numb; and there’s only so much online solitaire one can play … I had to figure a way to get out and around.
A Taxi Gets Me Out for a Shop, a Flirt, and a Pint
As most of us with chronic illness are wont to do, I found a work-around.
Even the ¾-mile trek into the town was too much for me, so a local taxi kept me from having to call on friends for a lift (though they have quite willingly offered such service). I can’t get around very easily in my current state, so I don’t do much when I get there, but at least I’m out of the house.
I pick up a couple of things we might need from the shop, which is never a lonely encounter in our town. It affords me a chance to catch up with a bit of gossip, show that I’m not at the undertaker’s yet, and flirt with the ladies at the cash. Never has a trip for a liter of milk been more satisfying.
Then, the best part of my new Friday routine: A few doors down from the grocery is my local pub.
A quiet back room where I can read the papers, complain about the price of wool with some of the regulars, and enjoy a self-prescribed Rx pint of the black stuff. Caryn collects me on her way home from work, and we grab a simple takeaway for our dinner.
CONTINUE reading Trevis' story by clicking here .

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Guidance for the use of disease modifying therapies during the COVID-19 pandemic

People with MS have asked for guidance on the use of disease Modifying Therapies (DMTs) during the COVID-19 pandemic. There are numerous recommendations circulating that attempt to provide clarity and guidance, however, differences among the recommendations have created confusion. DMT decision making varies significantly from country to country, ranging from highly provider-directed to a collaborative decision-making model.
The MS Coalition has endorsed global advice from the MS International Federation on DMT use during the COVID-19 pandemic. Their recommendations provide detailed guidance for the initiation and continuation of DMTs
The MS Coalition has also endorsed recommendations from The National MS Society’s National Medical Advisory Committee, which believes DMT decisions should be individualized and made collaboratively between the person with MS and his/her healthcare provider.  These recommendations are:
People with MS should follow CDC guidelines and these additional recommendations for people at higher risk for serious illnesses from COVID-19.People with MS should continue disease modifying therapies (DMTs) and discuss specific risks with their MS healthcare provider prior to stopping a DMT.Before starting a cell depleting DMT* or a DMT that carries warnings of potentially severe increase in disability after stopping**, people with MS and their MS healthcare providers should consider specific risks (e.g. age, comorbid health conditions, location) and benefits.
We are continuing to monitor this quickly evolving situation and these recommendations may be modified as data becomes available.
* Cell depleting therapies include: Lemtrada, Mavenclad, Ocrevus and Rituxan (used off-label in MS)
** DMTs with a warning of potentially severe increase in disability after stopping include: Gilenya and Tysabri

*** Members of the MS Coalition include: Accelerated Cure Project for Multiple Sclerosis, Can Do MS, Consortium of Multiple Sclerosis Centers, International Organization of Multiple Sclerosis Nurses, MS Views and News, Multiple Sclerosis Association of America, Multiple Sclerosis Foundation, National Multiple Sclerosis Society and United Spinal Association


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Mobility Support Devices for Secondary Progressive MS: Braces, Walking Devices, and More

Secondary Progressive Multiple Sclerosis (SPMS) can cause a variety of symptoms, including dizziness, fatigue, muscle weakness, muscle tightness, and loss of sensation in your limbs.
Over time, these symptoms may affect your ability to walk. According to the National Multiple Sclerosis Society (NMSS), 80 percent of people with MS experience challenges walking within 10 to 15 years of developing the condition. Many of them can benefit from using a mobility support device, such as a cane, walker, or wheelchair.
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It may be time to consider using a mobility support device if you’ve been:
feeling unsteady on your feetlosing your balance, tripping, or falling frequentlystruggling to control the movements in your feet or legsfeeling very tired after standing or walkingavoiding certain activities because of mobility challenges
A mobility support device may help prevent falls, conserve your energy, and increase your activity level. This can help you enjoy better overall health and quality of life.
Take a moment to learn about some of the mobility support devices that may help you stay mobile with SPMS.
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Ocrevus Use Rises Among New Starters with RRMS, Loses Ground to Other Therapies in PPMS

Ocrevus Use Rises Among New Starters with RRMS, Loses Ground to Other Therapies in PPMS
Feb 17, 2020 - By Ed Tobia




Ocrevus (ocrelizumab) bolted out of the starting gate after it was approved for use in the U.S. about three years ago. However, though its use by people with relapsing forms of Multiple Sclerosis continues to rise, fewer people with Primary Progressive MS are taking the medication. These findings from Spherix Global Insights are similar to anecdotal reports that I’ve been reading online by people who are being treated with Ocrevus.


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First-line use of Genentech‘s Ocrevus (ocrelizumab) for patients with multiple sclerosis (MS) has remained Stable through 2019 compared to 2018, according to the latest Spherix Global Insights report.
However, the latest edition of “RealWorld Dynamix: DMT New Starts in Multiple Sclerosis (US),” based on 1,006 charts of MS patients prescribed their first disease-modifying therapy (DMT), confirms that Ocrevus prescriptions still lag behind other first-line medications, including Teva‘s Copaxone (Glatiramer Acetate), Biogen‘s Tecfidera (Dimethyl Fumarate), Mylan‘s generic Glatiramer Acetate, and Novartis‘ Gilenya (fingolimod).

In turn, Ocrevus use as treatment starter almost doubled among relapsing-remitting MS (RRMS) patients, while falling by half among primary progressive MS (PPMS) patients, equalling out its overall use.
Click here to read the full story.


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Menopause and MS

Menopause and MS

At some point between their late 40s and early 50s, most women will start to experience the first signs of menopause. During this life transition, estrogen levels in the body decline. Menstrual cycles become unpredictable and eventually stop.
While menopause can bring a welcome respite from your monthly periods, it can also usher in new symptoms like hot flashes, vaginal dryness, and interrupted sleep. For women with Multiple Sclerosis (MS), it may be hard to tell the difference between symptoms of MS and signs of menopause.
Some women find their MS gets worse once their menstrual cycles end.

If you’re in your late 40s or early 50s and you have MS, it can be hard to tell whether you’re in menopause or you’re experiencing an MS flare. symptoms of the two conditions can look very similar.
symptoms common to both menopause and MS include:
fatiguebladder problemslack of interest in sex or trouble getting arousedvaginal drynesstrouble concentratingsleep problemsmood swingsdepression
If you’re not sure whether you’re entering menopause or your MS worsens, see a gynecologist. A blood test can check levels of estrogen and other hormones to confirm if you’re starting menopause. 

MS and menopause age
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Advancing MS: Coping with Depression, Stress, and Anger


Multiple Sclerosis (MS) can profoundly affect your physical health, but it can also take a serious toll on your mental health. Depression, stress, anxiety, and mood swings are all common in people with advancing MS, but it’s possible to manage these emotional changes. Here are some ways to reduce stress, create a healthier mindset, and maintain a better quality of life.

If you have MS, you know that each day brings new challenges and questions. Constant uncertainty and worry can cause almost anyone to feel anxious, stressed, or fearful.
According to the Cleveland Clinic, the most common emotional changes you may experience with MS include:
depressive symptoms and episodesgrieving for the loss of a “normal” lifestress and anxietycognitive changesangerinsomnia


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Your experience of the disease may lead to depression. For example, your changing body and mind may affect how you feel about yourself and your life. The disease itself may also cause depression: As MS attacks the myelin, your nerves may no longer be able to correctly transmit the electrical impulses that affect your mood.
The good news is that depression can be treated. In most cases, doctors prescribe a combination of therapy and antidepressant medication. Talk therapy may be one-on-one with a licensed professional, or your doctor may suggest meeting in group therapy sessions with other people who also have MS.



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This March, Celebrate Your Support Partners

This March, Celebrate Your Support Partners

Join us in recognizing the support partners who help empower and inspire the Multiple Sclerosis (MS) community and learn more on AboveMS.com to discover #MySupportHero and access helpful support resources.



March is Multiple Sclerosis (MS) Awareness Month, and we are excited to celebrate the fifth year of #MySupportHero along with Biogen and other MS organizations— a program designed to celebrate and say thank you to those who provide incredible support and inspiration for people living with MS.
#MySupportHero offers a special way to celebrate the countless unsung heroes who play an important role in standing by people with MS. Whether it’s family, friends, healthcare professionals, pets or support groups, this is our way of saying THANK YOU to those who strengthen the MS community!


Join in on #MySupportHero:
·        Recognize your support partner(s) on social media using the #MySupportHero hashtag:
o    Consider posting a photo or short video honoring this special person in your life
·        Share words of appreciation or why you’re grateful for your support heroes in honor of the fifth year of #MySupportHero

Learn more about #MySupportHero on
AboveMS.com, Above MS Facebook and @AboveMSBiogen.

Note: 
Biogen does not have any involvement with content unrelated to #MySupportHero on MS Views and News’ website and social media pages.
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A Love Triangle: Her, Him and MS

A Love Triangle: Her, Him and MS
By The National MS Society                                            
Building a successful relationship is hard work. Throw MS into the equation, and it can be even more challenging.

We talked to Kate and Frank, married for over 10 years, to discuss how MS affects their relationship and family life.

How has MS changed you as a person?
 
Kate: As a care-partner, MS has made me more aware that every day is unique, and one bad day does not mean that another will follow. I can say this now, a few years into our new life as an MS family. But when we had a baby and a toddler while learning how to maneuver through a diagnosis, I felt like one bad day would last forever. I try a little harder now to not dwell on one bad day, or even one bad morning. It’s also made me “try” to take better care of myself and recognize when I need a break. We’ve often prioritized Frank’s rest, and that meant that I would shoulder most of the responsibilities of our family and home. It’s taken a few years for all of us to realize that no one person can do everything and that I can only help others if I help myself sometimes first.
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Frank: MS has changed me in almost every way a person can change. It has given me a new approach to life and made me recognize and value the “good times” more than I ever have because there have been plenty of more challenging times. It has also changed me physically since I’ve been exercising more than I ever have.

How has MS changed your marriage?

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Learn about Cruising and MS

By Laura Kolaczkowski · February 21, 2020

Vacation travel can present challenges for anyone. Life with MS also has its own challenges. Combine MS and vacation and you can get an entirely new set of challenges. When the community managers at MultipleSclerosis.net asked me to write about taking vacation cruises while living with MS, I jumped at the chance. Actually, the truth is I can’t jump anymore, but I am more than happy to share several tips I have learned of how to make the most of cruising. Not everyone will ever take a cruise, or even be interested in doing so. But in case you are traveling by big boat, this is the first in a series of articles where I share some personal tips and tricks to make the most of your vacation.

Attitude is everything

don’t do well with large crowds, and it would be heavenly if we could cruise on a small ship with only a handful of passengers and a very attentive crew. Unfortunately, we don’t have access to a private yacht and instead cruise on the big liners, along with thousands of other vacationers. The good news is, there is still an attentive crew to attend to your needs and ways to avoid the crowd.
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A mix of different types of travelers

Our most recent trip was on the Norwegian Cruise Line ship Escape, and we were onboard with 5,000+ strangers. The mix of cruisers range from the young crowd able to party all day and night, to the more sedentary travelers like my husband and me who are content to just do very little and looking to relax.

You can (mostly) avoid the crowd

Fortunately, on most ships, you only encounter the massive crowd during embarkations/disembarkation (boarding on and off the ship) and can find places that are less crowded and chaotic if that is your choice. You can mingle with others at shows, bingo, and other activities on board following a schedule that runs from sunrise to well after midnight each day. For us, quiet time sitting on the balcony of our cabin is more our style.
Realistic expectations
The glossy cruise ship brochures highlight the good life of sitting poolside but the reality is with 5,000 people on board, and a pool with a capacity limit of about 100, getting a spot in the water is a tough if not impossible challenge. Often even finding a chair on the deck to catch some sun is difficult.

Finding quiet places on the ship

Alcohol tends to flow morning, noon and night, and can affect the social manners of many people who otherwise would be more considerate. Don’t be surprised if in busy places on board you feel like you are in Times Square in New York City as the ball drops at midnight on New Year’s Eve. Elbow to elbow crowds are not unusual during peak times, but it is also easy to find the quiet places on the ship where you can be out of the flow.
Cruise ships are small floating cities, and you can expect to walk a lot so pack good hiking shoes. Getting on and off the ship at the various ports usually involves navigating lengthy piers. Some piers have transportation while others require the passengers to travel by their own means.
NCL’s Escape docked at Harvest Caye, Belize

State your needs clearly

It is absolutely essential that you know if you will need any special accommodations before departing for a cruise, and you must state them clearly when you make the reservation.

Call the cruise line’s office of accessibility needs

To LEARN MORE - CLICK HERE



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Addressing social stigmas and barriers in our MS and disabled communities

By Mary Pettigrew



“We are challenged by people who perpetuate stigmas about disability; we are challenged by people who cannot be bothered to make locations accessible; we are challenged by inadequate legislation.” 

-- Emily Ladau, disability rights activist and blogger

Each day, I navigate through life as a person with MS and as a patient advocate. Each day, I take notice of my surroundings, paying close attention as to how accessible and inclusive things are in my city. There are many areas in need of improvement and are lacking in the practices and policies necessary to accommodate the needs of our society as a whole – for people with and without disabilities. The more we advocate for change, the better chance to create a society where all people can participate more fully. But, before we can remove the barriers and social stigmas throughout our communities, we must first identify what they are. I will touch on just a few of these issues in this article. 

Language

Most people probably don’t realize the hidden ableism behind the euphemisms. There are several inappropriate euphemisms which continue to be used in our world. Terms like handicapped, challenged, and special needs tend to bother me the most. Most people simply don’t know any better and mean no harm, but that doesn’t make it acceptable. Good intentions or not, words, labels, euphemisms and actions can be disempowering, patronizing, and even hurtful. 

It’s likely I have used these terms at a time before my own diagnosis, but 20 years later, I know differently. I am a person living with MS. I do believe people have the right to refer to themselves in the ways they feel most comfortable as long as they don’t push it onto others. I am a person living with MS.

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To explore the full etymology of the word handicap, go here.


Body language can speak just as loud as words sometimes. When people look at those of us with disabilities differently, we notice. Thus, making it all the more difficult for us to feel comfortable in our environment. I’ve seen people speaking about individuals with disabilities as if they don’t exist, even though they’re right there and can hear every word. Others think they are being kind in their interactions, some even patting the shoulder of people in wheelchairs or speaking to them in child-like tones. This behavior is more destructive than helpful and the nondisabled population needs to understand.

Speak up for yourself and for others because the more we can do to educate society, the more opportunity for change. Also, learn to use People First Language. If you are a “disabled person” or a “person living with MS,” then tell people that’s what you wish to be called if the situation calls for clarity.

Disabled parking placards

No matter if your symptoms are invisible or visible, your doctor might determine you need to use a disabled placard and will provide the necessary forms to acquire one. Too often I’ll see conversations on social media about the negative experiences people have had when using their placard. Some are faced with scowls, verbal confrontations, followed into stores, find cruel notes on cars, or even had the police called on them. This is beyond unacceptable and is one of the most upsetting examples of judgement and stigma towards people with MS. If not handled swiftly and effectively, our mental health becomes vulnerable to anxietyfear, agoraphobia, and the Worsening of other MS symptoms. It’s important for us as humans to get out. We all need mental stimulation and socialization, so it’s critical we not take this basic need away from ourselves.

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The coronavirus and MS – what you need to know

The coronavirus and MS – what you need to know
Information showing below is provided by MS International Federation

What does the coronavirus (COVID-19) mean for people living with MS?
Last updated: 13th February 2020

The ‘novel coronavirus’ (recently named by the World Health Organization as COVID-19) is a respiratory illness that has not previously been seen in humans. COVID-19 is a strain of coronavirus that was first detected in China in December 2019, and has since spread to other parts of the world.

What does COVID-19 mean for people living with MS?

As this strain of the coronavirus is new, we still need to learn more about how it may affect people with MS.
Many disease modifying therapies (DMTs) for MS work by suppressing or modifying the immune system. We know that people with MS who are receiving these therapies can face an increased risk of complications related to viral infections.
If you are taking a DMT and are either exposed to COVID-19 or are confirmed to have the COVID-19 infection, please contact your neurologist or other medical professional.

What are the symptoms of COVID-19 and how to protect against it?

symptoms of COVID-19 include difficulty breathing, a cough and a high temperature, which can progress to pneumonia.
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The World Health Organization provides a few basic measures for protecting against COVID-19. These include:
Wash your hands frequently with an alcohol-based hand rub or soap and waterWhen coughing and sneezing, cover your mouth and nose with a flexed elbow or tissueKeep at least 1 metre distance between yourself and others, particularly those who are coughing and sneezingAvoid touching eyes, nose and mouthPractise food safety by using different chopping boards for raw meat and cooked foods and wash your hands between handling them
It is important to avoid contact with anyone who may have been living or travelling in an area where COVID-19 has been circulating. Get the latest updates on where there have been reported cases of COVID-19 from the World Health Organization here.
You can also find out the answers to some commonly asked questions about COVID-19 on the World Health Organization’s website.
Find out more about COVID-19 in the short informational video below, from the World Health Organization.
             READ MORE by CLICKING HERE



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The emotional and cognitive effects of MS are often its greatest challenges

The emotional and cognitive effects of MS are often its greatest challenges
Some of the most common but hidden symptoms of MS are the changes people may experience related to cognition and their emotions. These changes can affect the way people feel about themselves and alter their cognitive functions. For many, the emotional and cognitive effects of the disease represent its greatest challenges.

Emotional changes

There are a number of emotional responses that appear to be common as people learn to deal with having MS. Uncertainty, stress and anxiety are the most common, not just during diagnosis, but throughout the course of the disease.
A person with MS may grieve for their life before MS and their self-image may take a while to adjust to having MS. Other emotional changes that may occur in MS include clinical depression, bipolar disorder, and mood swings. All of these are more common among people with MS than in the general population. Depression and bipolar disorder require professional attention and the use of effective treatments.
Emotional lability appears to be more common, and possibly more severe, in people with MS. This may include frequent mood changes, for example from happy to sad to angry.
It is believed that the causes are the extra stress brought on by MS as well as neurological changes.
Uncontrollable laughing and crying is a disorder affecting a small proportion of people with MS, and is thought to be caused by MS-related changes in the brain.

Low self-esteem

Having MS can affect self-esteem. There may be times when it’s difficult to do everything a person is used to doing, or they may have to do things differently. Focusing too much on the negative aspects can feel overwhelming. This one minute infographic gives some confidence boosters and tips for managing low self-esteem and MS. Thanks to the UK MS Society for providing the text for this infographic.

MS organisations around the world have translated the infographic into a range of languages.
Low self-esteem and MS (English)Baja autoestima y EM (Spanish)Autoestima e Esclerose Multipla (Portuguese)Psychologiczne aspekty SM – samoocena (Polish)MS en een laag zelfbeeld (Dutch)Sclérose en plaques et estime de soi (French)טרשת נפוצה והערכה עצמית נמוכה (Hebrew)
If you’re interested in translating it into an additional language, contact This email address is being protected from spambots. You need JavaScript enabled to view it.

Cognitive changes

Cognition refers to the “higher” brain functions such as memory and reasoning. About half of all people with MS will not experience any cognitive changes, but for others, the most commonly affected aspects of cognition are:
MemoryAttention and concentrationWord-findingSpeed of information processingAbstract reasoning and problem solvingVisual spatial abilitiesExecutive functions
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Functional activity of anti-LINGO-1 antibody opicinumab requires target engagement at a secondary binding site

Functional activity of anti-LINGO-1 antibody opicinumab requires target engagement at a secondary binding site
 2020 Jan-Dec;12(1):1713648. doi: 10.1080/19420862.2020.1713648.

Abstract

LINGO-1 is a membrane protein of the central nervous system (CNS) that suppresses myelination of axons. Preclinical studies have revealed that blockade of LINGO-1 function leads to CNS repair in demyelinating animal models. The anti-LINGO-1 antibody Li81 (opicinumab), which blocks LINGO-1 function and shows robust remyelinating activity in animal models, is currently being investigated in a Phase 2 clinical trial as a potential treatment for individuals with relapsing forms of Multiple Sclerosis (AFFINITY: clinical trial.gov number NCT03222973). 

Li81 has the unusual feature that it contains two LINGO-1 binding sites: a classical site utilizing its complementarity-determining regions and a cryptic secondary site involving Li81 light chain framework residues that recruits a second LINGO-1 molecule only after engagement of the primary binding site. Concurrent binding at both sites leads to formation of a 2:2 complex of LINGO-1 with the Li81 antigen-binding fragment, and higher order complexes with intact Li81 antibody. To elucidate the role of the secondary binding site, we designed a series of Li81 variant constructs that eliminate it while retaining the classic site contacts. These Li81 mutants retained the high affinity binding to LINGO-1, but lost the antibody-induced oligodendrocyte progenitor cell (OPC) differentiation activity and myelination activity in OPC- dorsal root ganglion neuron cocultures seen with Li81. The mutations also attenuate antibody-induced internalization of LINGO-1 on cultured cortical neurons, OPCs, and cells over-expressing LINGO-1. Together these studies reveal that engagement at both LINGO-1 binding sites of Li81 is critical for robust functional activity of the antibody.

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PMID: 31928294 PMCID: PMC6973334 DOI: 10.1080/19420862.2020.1713648




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