7 Lifestyle Changes to Help Slow MS Progression Inbox

MS is a lifelong disease. Your symptoms may gradually get worse as it progresses and parts of the brain and spinal cord get damaged. But a few simple lifestyle changes can help you stay mobile and have a good quality of life for a long time.

Stick With Your Treatment

There are more than a dozen medicines that doctors recommend to prevent relapses and slow MS. These treatments can help you feel better, but only if you take them.

Treatment Timeline

The goal with MS treatment is to prevent more trouble, says Randall Trudell, MD, an expert on this neurological disease. He says there are many effective medications from pills to infusions to help prevent relapses.

It can be hard to think about taking medications for many years to come. But the sooner you get on the right medicine routine and the longer you stick with it, the better you'll control your disease.

Some people stop taking their medicine because they don't think that it helps them or they have side effects. Talk to your doctor if that happens. They may be able to adjust your dose, switch you to a new drug, or help you manage any side effects you do have.

If you've stopped treatment because you can't afford your medicine, check with the MS Society or the company that makes the drug. They may be able to help you cover the cost.

It's also important to manage any other health problems you have. Heart disease, diabetes, lung disease, and depression can all make your MS progress more quickly. See your primary care doctor or a specialist to get diagnosed and treated.

Exercise

Years ago, doctors warned people with MS to avoid exercise because they thought it could make the disease worse. Today they know that the opposite is true.

Exercise strengthens the muscles that help you walk. It also eases fatigue, boosts mood, and improves quality of life in people with MS. There's even some evidence that strength training might help slow MS damage in the brain.

An exercise program for MS includes 150 minutes of "aerobics" each week. These are activities that get your heart pumping, like walking or swimming. Work out at your own pace and level. Also stretch for at least 10 minutes each day to release tight muscles.

Use weights or resistance bands twice a week to strengthen your muscles. A physical therapist can show you how to do each exercise correctly to prevent injury.

Eat a Healthy Diet

A balanced diet is important for your health in general, but especially when you have a long-term disease like MS. Research shows that people with MS who eat a lot of fruits, vegetables, and whole grains have less disability and fewer symptoms like depression and fatigue than those who eat less of these healthy foods.

Limit processed foods and animal fats like red meat and butter. Get your fats from healthier sources such as fish, nuts, avocados, and olive oil.

Vitamin D

People who have higher levels of vitamin D in their blood are at lower risk of getting MS. Research is underway to see if there's a link between vitamin D levels and curbing your relapses. 

You can get your daily vitamin D from foods like fatty fish and fortified milk. Your body also makes its own stores of this vitamin when your skin is in sunlight. A blood test can show whether you're low in vitamin D. If so, a supplement will help boost your levels to where they need to be.

Get Restful Sleep

A lack of sleep may not make your MS progress, but it can certainly make you feel worse. It's hard to fall asleep and stay asleep all night when you're in pain, you feel depressed, or you have to get up to use the bathroom many times. Steroids and other medicines you take to control MS can also keep you awake.

Ask your doctor whether any of your MS medicines could be affecting your sleep. Treat pain and other symptoms that are getting in the way of a restful night's sleep. Try to relax and let go of stress before bed with a warm bath, calming music, or a good book.

Don't Smoke

Yet another reason not to smoke is that it can make your MS get worse, more quickly. Smoking also raises your chances of getting heart and lung diseases, which speed up MS progression.

It's not easy to quit, especially if you've smoked for many years. But when you do kick the habit, you'll start to see health benefits right away. Make a plan to quit, get support from your doctor and friends, and have medicines and other tools on hand to lessen the urge to smoke when it hits.

Get Vaccinated

Infections like the flu can make your MS relapse and your symptoms flare up. Get your flu vaccine each fall to avoid getting sick. If you take a disease-modifying drug for MS, don't get the FluMist nasal spray because it's a live vaccine. Since your immune system -- the body's defense against germs -- is weaker from MS, the flu shot, which contains a dead form of the virus, is safer for you.

Ask your doctor whether you're up to date on all the other vaccines you need to stay healthy.

From: WebMD

 

 

Survey on Complementary/Alternative Medicine Points to Increasing Use by People with MS

The use of complementary and alternative therapies – including vitamin/mineral supplements, mind-body therapies, diet, and exercise – is widespread in MS (81%), according to researchers from Oregon Health & Science University who report on a survey of 1,014 people with MS. It is also on the rise; the team compared these survey results to those of a similar survey conducted in 2001, and found that use of all therapies increased significantly. Respondents to the current survey were nine times more likely to speak with their neurologist about use of these therapies than in 2001.

Many complementary/alternative therapies are considered to be outside the realm of conventional medicine, although others, including vitamin D, exercise, acupuncture, and cooling strategies, for example, have established their role in comprehensive care through scientific study and clinical trials. The survey results highlight the need for  more research to determine the safety and effectiveness of specific complementary and alternative therapies, conclude the study authors. This study was partly funded by the National MS Society. Lead author Elizabeth Silbermann, MD, is funded by the Society’s Sylvia Lawry Fellowship, which trains individuals to conduct clinical research in MS.

Read more on the OHSU website

Read a scientific summary of the paper in MS and Related Disorders

Read more about complementary therapies and MS, including questions to ask when considering a complementary/alternative therapy

Results Published from Trial of Siponimod in Secondary Progressive MS

• Results of a 60-month, phase III clinical trial of the experimental oral therapy siponimod (BAF312, Novartis Pharmaceuticals AG) involving 1,651 people with secondary progressive MS have been published. The results were originally presented in September 2016 at the ECTRIMS conference.
• The trial met its primary endpoint of reducing the risk of disability progression compared with inactive placebo. Those on active treatment had a 21% reduced risk of disability progression compared to those on placebo. Secondary endpoints suggested that those on active therapy had 23% lower average change in brain volume and reduced lesion volume. There was no significant difference seen between groups in the timed 25-foot walk.
• The therapy was generally well tolerated and similar to adverse events reported for similar compounds. The serious adverse events reported to be more likely for those taking siponimod included nervous system disorders and infections.
• Dr. Ludwig Kappos (University of Basel in Switzerland) and a large team of investigators report detailed results of the trial in The Lancet (online March 22, 2018). A commentary about the results by Drs. Luanne Metz and Wei-Qiau Liu (University of Calgary) is also published online.

DETAILS
Background: Siponimod (BAF312) is an experimental immune system-modulating therapy that was designed to be a more selective sphingosine 1-phosphate receptor modulator than Gilenya® (fingolimod, Novartis International AG). Gilenya, was approved in 2010 for adults with relapsing forms of MS to reduce the frequency of clinical relapses and to delay the accumulation of physical disability. Siponimod previously demonstrated safety and efficacy on MRI scans in a phase II study in people with relapsing-remitting MS (The Lancet Neurology, 2013 Aug;12(8):756-67).

Siponimod is thought to act by retaining certain white blood cells in the body’s lymph nodes, keeping them out of circulation and from entering the central nervous system. Siponimod also distributes effectively to the central nervous system (brain and spinal cord) where it may have direct anti-inflammatory or other effects.

The Study: Participants with secondary progressive MS were randomly assigned to take siponimod or placebo capsules daily for up to 60 months. The primary endpoint of the study was reducing the risk of disability progression, as measured by the EDSS scale that was sustained for at least 3 months. Secondary endpoints included reducing the risk of disability progression as measured by the EDSS at six months, the risk of worsening mobility as measured by the timed 25-foot walk test, disease activity as observed on MRI scans, relapse rate, and safety/tolerability.

Results: The results were originally presented in September 2016 at the ECTRIMS conference. The trial met its primary endpoint of reducing the risk of disability progression compared with inactive placebo. Those on active treatment had a 21% reduced risk of disability progression (confirmed at 3 months) compared to those on placebo. Secondary endpoints suggested that those on active therapy had a 23% lower average change in brain volume, and reduced MRI-detected brain lesion volume. There was no significant difference seen between groups in the timed 25-foot walk. Relapse rates were significantly lower in those taking siponimod.

Safety: The therapy was generally well tolerated and similar to adverse events reported for related compounds. Serious adverse events occurred in 16.7% of participants. The serious adverse events reported to be more likely for those taking siponimod included nervous system disorders and infections. More of those taking siponimod than the placebo experienced adverse events (89% vs 82% patients), such as a slower heart rate, high blood pressure, reduced white blood cell counts, macular oedema (swelling at the back of the eye), increased liver enzymes, and increased numbers of convulsions.

Dr. Ludwig Kappos (University of Basel in Switzerland) and a large team of investigators report detailed results of the trial in The Lancet (online March 22, 2018). A commentary about the results by Drs. Luanne Metz and Wei-Qiau Liu (University of Calgary) is also published online.

Comment: “While the magnitude of this response is somewhat modest, it represents a milestone in our unrelenting search for treatments that will benefit people living with progressive forms of MS,” said Bruce Bebo, PhD, Executive Vice President of Research at the National MS Society.

Resources
Read about secondary progressive MS
Read about the International Progressive MS Alliance, an unprecedented global collaboration of MS organizations, researchers, clinicians, pharmaceutical companies, and people with progressive MS, transforming the landscape of multiple sclerosis.

 

Study Uncovers Gene Variation Linked to Response to MS Therapy; May Open Up New Treatment Approaches

Collaborating researchers in the U.S. and Italy have uncovered a gene variant that appears to influence whether a person responds well to interferon beta, a commonly used therapy for relapsing forms of MS. More broadly, the gene may regulate immune activity in unexpected ways, and its discovery may lead to new approaches to stopping inflammation and immune attacks in MS. Drs. Federica Esposito and Filippo Martinelli Boneschi (San Raffaele Scientific Institute, Milan), Philip L. De Jager (Brigham and Women’s Hospital, Boston) and colleagues have published their results in the Annals of Neurology (Early online May 14, 2015). The study was supported by the National MS Society and several other agencies.
Background: For reasons that are unclear, some people with relapsing forms of MS do not respond well to therapy and continue to experience disease activity despite being on a disease-modifying therapy. Previous genetic studies in MS have uncovered over 159 genetic variations that contribute to making people susceptible to developing MS, but these studies haven’t identified genetic variations that influence how a person responds to treatment. Finding a way to identify early in the disease course the best therapy for an individual – a “personalized medicine” approach – is likely to improve outcomes of treatment and quality of life for people living with MS. One of the lead authors of this study, Dr. De Jager, recently won the Barancik Prize for Innovation in MS Research for tackling critical questions like this with the goal of developing personalized treatments and prevention of MS.
This Study: Trying a different approach to search for genetic influences on treatment responses, the investigators first studied a group of individuals with MS who were taking interferon beta or glatiramer acetate. The individuals were classified as being responders, partial responders, or non-responders to their medication based on specific criteria. Then the researchers analyzed their full complement of genes (genome-wide association study) and found one genetic variant that was consistently associated with lack of response to interferon beta. When the researchers repeated this in three other groups of people with MS from Italy, France and the U.S., this finding held up.
The genetic variant (rs9828519) is near a gene (SLC9A9) that controls pH levels (acidity) within cells. The team explored functions of this gene, and found that its activity was diminished in people more likely to have MS relapses. They also conducted laboratory work, finding suggestions that the gene appears to play a role in regulating immune cell activity, and that its loss leads to damaging immune reactions. This suggests the gene may play a broader role in regulating immune activity.
Comment: Although the results of this study are not yet ready for applying to the management of MS, this discovery may lead to new approaches for stopping inflammation and immune attacks in MS. In addition, this study is an important step toward the goal of personalized medicine. The researchers point out that additional research is warranted to confirm their findings and to determine whether the genetic variant is relevant to how well people respond to other MS medications.

Writing Mom’s Story

         I began writing the story in late 2007.  Actually, I began the story in February 1978. Immediately after getting out of bed that February morning, I couldn’t stand. The   room was whirling, my stomach was churning. I sat on the edge of t he bed until my head cleared a little and I could stand. I tried to dress, but wasn’t able to bend down without the room spinning again and the nausea returning. I made a doctor’s appointment. He couldn’t find anything and treated me with Dramamine for a mild middle ear inflammation. It cleared after about a week and I put the occurrence in the back of my mind. In August of the same year, I awoke one morning with a gray spot in the vision of my left eye. It enlarged over the morning. By afternoon, my vision in my left eye was limited to the extreme outer edges. Being Saturday, I went to the Emergency Room, convinced I was going blind. An Ophthalmologist happened to be on duty. He diagnosed the problem immediately as optic neuritis and prescribed prednisone. That cleared in about eight weeks.

         Fast forward to 1989. I had been a “normal volunteer” at the National Institutes of Health for several years. I was asked if I would volunteer for an MRI. They said it’s easy if you’re not claustrophobic, no needles, only some noise. I said I would be glad to do it. They were right, lots of noise but no other discomforts. About a week later, a physician called to tell me that they found something strange on my brain. I went back to the physician and came away with a definite diagnosis of multiple sclerosis (MS). I launched a search for information, this being pre-internet, I went to libraries and contacted the National Multiple Sclerosis Society (www.nmss.org ).

         By June of 2006 I had retired on disability from my position as a Science Librarian and worked from home as an editor and writer. I attended a meeting of the Outdoor Writers Association of America (www.owaa.org ). I was interested in writing for children by this time and I attended a session given by the renowned children’s author, Kathleen Kudlinski (www.kathleenkudlinski.com ). Her one piece of advice (among others) that I took away from her presentation was: “Write what you know.”

         In October 2007, after spending over a year researching and learning about writing for children, I asked myself, “What do I know?” It came to me quickly, I know about MS. I have been interested in health issues and have read quite extensively, especially about plagues and infectious diseases. But also about MS, I have an extensive library about the disease and I have reviewed books on the subject for Library Journal. 

       Now in its second edition.