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Tuesday, December 3, 2019

The Reasons People With MS Leave Their Jobs Differs by Stage of Life, Study Finds

Younger and older people are more influenced by painful symptoms, while those in midlife retire for psychological reasons

By Becky Upham
Last Updated: November 05, 2019

Some people with MS leave their jobs without first asking for accommodations that could help them stay.iStock

Multiple sclerosis (MS) is usually diagnosed between the ages of 20 and 45, often a time in life when a person’s career is just getting started or in full swing. 
Although most people with MS are employed when they are first diagnosed, many of the symptoms of MS, particularly fatigue and difficulty concentrating, can make holding down a traditional job difficult; it’s estimated that 70 percent of people with MS leave their job within 10 years of their diagnosis, according to the MS International Federation’s Global MS Employment Report 2016.
Just as every person experiences the symptoms and progression of MS differently, the way the disease impacts work can vary widely from person to person. New research, published September 14, 2019, in Journal of Health Psychology, explored how the factors that drive a person with MS out of the workplace differ by age.
Among people with MS considering leaving their employment, symptoms of the disease were the primary driver for people in their thirties and fifties, whereas psychological reasons were the dominant force for people in their forties.



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Holiday Gift Guide for People With MS

By Cathy Cassata
Medically Reviewed by Samuel Mackenzie, MD, PhD

Wrapping a gift for a person with MS
Finding the perfect gift for your friend with MS makes both of you feel good! Getty Images

Buying gifts is tough. Do you choose something practical or fun? Should you go with a safe gift purchase or something the recipient wouldn't buy for themselves? And if the person you're buying for has multiple sclerosis (MS), how can you make sure the gift is spot-on?

"Gift-buying for a friend or loved one with MS can be quite simple, but you should always consider how honest they are with you about their symptoms," says Aaron Nicka, an occupational therapist at the Cleveland Clinic's Mellen Center for Multiple Sclerosis Treatment and Research in Ohio.

Someone who is open about having trouble with a certain task might appreciate a tool or gadget that is obviously an “adaptive” device, while a person who is more private about MS and its effects would likely prefer a gadget that could make life easier for anyone but isn’t specifically aimed at people with disabilities.

If you do buy a gift that’s intended to help with a complication of MS, think about who else will be there when the gift is opened. And if you think there’s a chance your friend or relative might feel embarrassed opening your gift in front of others, present it when the two of you are alone, or have it delivered, so no one else is present when the gift is opened.

Of course, even a person who is open about his MS symptoms may prefer to receive gifts that have nothing to do with MS. So keep your loved one’s hobbies, interests, and activities in mind when you’re gift shopping — along with his abilities. A shirt with tiny buttons isn’t a great gift for someone with fine motor control problems, even if it’s in his favorite color.

Most of all, be sure the gift is about the recipient as he is, and not about how you would like the recipient to be. Giving a gym membership to someone who doesn’t like to exercise or a vegetarian cookbook to someone who enjoys meat isn’t likely to go over well. For special occasions, give gifts you think your loved one with MS will really like.

To ease gift-giving woes, Nicka and a few people with MS share some ideas for good — even great — gifts.

See more here

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Monday, December 2, 2019

"Treating MS: A Simplified Strategy Boosts Patient and Provider Satisfaction"

Both the busy clinician and the overwhelmed patient benefit from a pointed approach to disease management.

Aaron Boster, MD
By: Aaron Boster, MD

Published: December 02, 2019

As the field of neuroimmunology evolves at an unprecedented rate, keeping up with the latest advancements in diagnosis and treatment of multiple sclerosis (MS) proves challenging. Many neurologists—even those who spend most of their time in the MS space—are overwhelmed in their clinical practice and research endeavors. Therefore, I intend to set aside interleukins and cytokines, pathophysiology, and immunopathogenesis and instead share some clinical pearls to help both simplify and advance your care for patients and families affected by MS.

My goal is to share a simple approach that will serve you and your patients well, with the aim of helping patients with MS be the best version of themselves possible despite their condition. The following recommendations are based on my formal fellowship training; my 13 years of experience dedicated to MS clinical prac- tice; my review and contributions to the canon of MS literature; my participation in over 65 MS clinical trials; and, most important, the things my patients have taught me.        

My rubric is straightforward. The goal is for patients to be “4 for 4” in key factors that have a significant impact on this condition. Here’s what you can do:

Initiating and Monitoring MS Therapy

As the clinician, you should help the patient choose the most effective DMT they are comfortable taking. Forgo the flawed escalation model, in which providers prescribe mildly effective drugs and allow patients to accrue neurological disability before escalating them to a more effective agent. Brain lost is never regained, and early brain and spinal cord damage sets a poor long-term trajectory. It is not the clinician’s job to be paternal and decide what risk a patient should or should not be exposed to. Instead, it is the clinician’s ethical obligation to educate the patient on the seriousness of untreated or undertreated MS and help their family understand how to place the risks and benefits of the given therapeutic in the context of the disease. I cannot stress this point enough.

Once you’ve initiated treatment with an effective medication, monitor the patient by listening to them, examining them to iden- tify disability progression, and reviewing serial neuroimaging.

At each visit, ask the following treatment-related questions:

All ambulatory patients should perform a timed 25-foot walk at each visit. This single test is more predictive of progression of disability than the entire traditional neurological examination. A 20% change in timed walk is both statistically and clinically signif- icant.1,2 Also, each patient should be screened for cognitive impairment. I’m partial to the Symbol Digit Modalities Test because the 90-second matching quiz is extremely sensitive; in fact, a 4-point drop is statistically and clinically significant.3

In addition, a magnetic resonance imaging (MRI) scan of the brain should be performed annually based on The Consortium of Multiple Sclerosis Centers protocol.4 I suggest that you personally review the scan, comparing it with the previous year’s results, and look for (1) new enhancing lesions, (2) new or enlarged T2 bright lesions, and (3) new T1 black holes and visual evidence of accelerated central atrophy (via measurement of the width of the third ventricle). I recommend imaging the cervical spinal cord every few years, even in the absence of new symptoms attributable to the spinal cord.

If the patient experiences breakthrough disease activity (new MRI lesions or clinical attacks), then discuss switching to a different highly effective DMT. Therapeutic inertia—identifying a clinical problem and not making changes to address it—contributes to poor outcomes, and both patients and practitioners are guilty of participating. I urge you to not sit idly by as your patient accrues brain damage and neurological disability.

It is equally important to not forget about invisible symptoms. If a highly effective DMT slows disability but the patient is miserable, then the clinician has not done the best job. The goal is to both slow disease activity and improve quality of life. Much of MS pathology is invisible and easily missed during a rushed clinic visit. Therefore, I recommend inquiring about invisible symptoms, including cognitive impairment, depression, fatigue, and bladder function, at each visit. When these symptoms are uncovered, I recommend they be aggressively treated.

At each visit, ask patients the following symptom-related questions:

Optimizing Patient Lifestyle

The remaining 3 of 4 factors have to do with patient empowerment. It is now known that untreated cardiovascular risk factors drive MS disease progression faster.5 Sedentary lifestyle, obesity, hypertension, hyperlipidemia, and prediabetes must all be considered in the management of patients with MS.6

Although it’s safe to assume that no one in the health care community promotes the smoking of tobacco, I am amazed at how passive our community of treaters is in fighting against tobacco use. It is imperative to educate patients that smoking increases
the risk of developing MS and, if they already have MS, speeds up disability progression.7 Smoking is the single most impactful modifiable risk factor in MS, so help patients who smoke quit by engaging them in a dialogue and connecting them with resources.

Encourage patients to move. Physical activity improves cognition, mood, energy levels, sleep quality, spasticity, and ataxia and buttresses patients against future attacks.8 Exercise programs should be customized to each patient’s interests and limitations but, ideally, address cardiovascular fitness (eg, stationary recumbent bike), balance (eg, chair yoga), core strengthening (eg, Pilates), and flexibility. In my experience, water-based exercises are excellent for patients with MS: A person weighs less in water, so moving on a weak leg is easier; if balance is off and the patient falls to the left, the water pushes back to the right. In addition, heat sensitivity is less of an issue because convection pulls heat off the body. If you are unsure where to start, consider sending the patient to a qualified neurological physical therapist who can introduce appropriate physical activity.

Although no diet to date has proved to slow MS disease progression, many diets can help improve cardiovascular disease; combat obesity; and, importantly, boost energy levels.9 I recommend a heart-healthy diet and avoiding fast food, sugar-laden foods, processed foods, and nearly unpronounceable/unrecognizable ingredients. Eating clean can lead to some amazing changes in a patient.

At each visit, ask patients the following lifestyle-related questions:

As an experienced clinician, I stand by this simple rubric to optimize the health and quality of life of a person affected by MS. If you help the patient and family embrace these 4 factors, you have changed their lives for the better.

1. Schwid SR, Goodman AD, Mcdermott MP, Bever CF, Cook SD. Quantitative functional measures in MS: what is a reliable change? Neurology. 2002;58(8):1294-1296. doi: 10.1212/wnl.58.8.1294.
2. Kragt JJ, van der linden FA, Nielsen JM, Uitdehaag BM, Polman CH. Clinical impact of 20% wors- ening on timed 25-foot walk and 9-hole peg test in multiple sclerosis. Mult Scler. 2006;12(5):594-598. doi: 10.1177/1352458506070768.
3. Benedict RH, Deluca J, Phillips G, LaRocca N, Hudson LD, Rudick R; Multiple Sclerosis Assessments Consoritum. Validity of the Symbol Digit Modalities Test as a cognition performance outcome measure for multiple sclerosis. Mult Scler. 2017;23(5):721-733. doi: 10.1177/1352458517690821.
4. 2018 revised guidelines of the of the Consortium of MS Centers MRI protocol for the diagnosis and follow-up of MS. The Consortium of Multiple Sclerosis Centers website. mscare.org/page/MRI_ protocol. Updated February2018. Accessed October 10, 2019.
5. Moccia M, Lanzillo R, Palladino R, et al. The Framingham cardiovascular risk score in multiple scle- rosis. Eur J Neurol. 2015;22(8):1176-1183. doi: 10.1111/ene.12720.
6. Jakimovski D, Weinstock-Guttman B, Gandhi S, et al. Dietary and lifestyle factors in multiple scle- rosis progression: results from a 5-year longitudinal MRI study. J Neurol. 2019;266(4):866-875. doi: 10.1007/s00415-019-09208-0.
7. Wingerchuk DM. Smoking: effects on multiple sclerosis susceptibility and disease progression. Ther Adv Neurol Disord. 2012;5(1):13-22. doi: 10.1177/1756285611425694.
8. Motl RW, Sandroff BM. Benefits of exercise training in multiple sclerosis. Curr Neurol Neurosci Rep. 2015;15(9):62. doi: 10.1007/s11910-015-0585-6.
9. Katz Sand I. The role of diet in multiple sclerosis: mechanistic connections and current evidence. Curr Nutr Rep. 2018;7(3):150-160. doi: 10.1007/s13668-018-0236-z.
10. Sintzel MB, Rametta M, Reder AT. Vitamin D and multiple sclerosis: a comprehensive review. Neurol Ther. 2018;7(1):59-85. doi: 10.1007/s40120-017-0086-4.

Article found here: Neurology Live :  https://Live t.ly/vLnpp


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Positive Phase III Results for Genentech’s Satralizumab in Neuromyelitis Optica Spectrum Disorder Published in the New England Journal of Medicine

Sunday - December 1, 2019

Satralizumab demonstrated robust efficacy, sustained for 144 weeks, in significantly reducing the risk of relapse in combination with baseline immunosuppressant therapy

Satralizumab targets the interleukin-6 (IL-6) receptor, a potential key driver of neuromyelitis optica spectrum disorder (NMOSD)

NMOSD is a rare, debilitating autoimmune disease of the central nervous system that can cause visual impairment, motor disability and even death

Genentech, a member of the Roche Group (SIX: RO, ROG; OTCQX: RHHBY), announced today that data from SAkuraSky, a pivotal Phase III study of the investigational medicine satralizumab for the treatment of neuromyelitis optica spectrum disorder (NMOSD), were published in the November 27, 2019 online issue of the New England Journal of Medicine (NEJM).
“The positive results from the pivotal SAkuraSky study of satralizumab support the hypothesis that IL-6 plays a key role in NMOSD, which is a debilitating and potentially fatal condition,” said Levi Garraway, M.D., Ph.D., chief medical officer and head of Global Product Development. “Satralizumab has shown robust efficacy sustained for 144 weeks across a broad patient population in two Phase III studies, whether given as a monotherapy or in combination with baseline therapy. We’re encouraged that satralizumab may soon provide a new treatment option for people living with NMOSD.”
People with NMOSD experience unpredictable, severe relapses that directly cause cumulative, permanent, neurological damage and disability. The condition is often misdiagnosed as multiple sclerosis. Satralizumab inhibits interleukin-6 (IL-6) signaling, which is believed to play a key role in the inflammation that occurs in people with NMOSD. Satralizumab can be self-administered every four weeks by subcutaneous injection.

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