November 22, 2019 Columns by Ed Tobias It’s Freezing and I’m Stuck on My Scooter It happened on the coldest day of the season. It was 16 degrees F with wind chill. I was outside, using my electric scooter to take Joey, our cocker spaniel, for his early morning walk. Joey had just finished his business. I was tying the poopie bag when I heard…
November 18, 2019 Columns by Ed Tobias MS News that Caught My Eye Last Week: Mayzent in EU for SPMS; Depression, Fatigue, and Quality of Life; Acthar Gel; Soothie Cushion CHMP Favors Mayzent as Oral Treatment Specifically for Active SPMS Patients in EU Mayzent (siponimod) is one of the newest disease-modifying treatments (DMT). I’m pleased that the Committee for Medicinal Products of Human Use (CHMP), which reviews treatments in the European Union, has recommended that the DMT be approved…
November 15, 2019 Columns by Ed Tobias Is It Good that Google Is Crunching Our Healthcare Data? Google has quietly teamed up with Ascension, one of the largest healthcare organizations in the United States, to process the medical records of millions of people. According to The Wall Street Journal, “Project Nightingale” involves all sorts of information about things like lab results,Ā diagnoses, and hospitalization records, and…
November 11, 2019 Columns by Ed Tobias MS News that Caught My Eye Last Week: EU Lemtrada Safety Guidance, Targeted Treatment Project, SPMS Patients Unaware of Diagnosis EMA Safety Group Advises Lemtrada Be Limited to āHighly Activeā RRMS Patients at Hospitals with ICUs I’m highlighting this report because, like several Europe-based doctors I know, I think that this decision is an overreaction. While there have been serious complications associated with Lemtrada (alemtuzumab), forcing a patient to…
November 8, 2019 Columns by Ed Tobias Top MS Worries Highlight the Need for a Comprehensive Care Program What worries you most about living with multiple sclerosis? I’m catching up with a small survey by Can Do MS, an organization that promotes health and wellness education programs. The survey results, released in September, show that disease progression, financial concerns, and loss of independence are at the top…
November 4, 2019 Columns by Ed Tobias MS News that Caught My Eye Last Week: Vumerity Approval, Low Antibody Levels in MS Patients, GA Depot Trial, Tecfidera Study Vumerity Approved in US as Treatment for RRMS and Active SPMS By my count, Vumerity is the 18th disease-modifying therapy (DMT) that the U.S. Food and Drug Administration (FDA) has approved for multiple sclerosis (MS). It’s one of very few approved for secondary progressive MS (SPMS). I find…
November 1, 2019 Columns by Ed Tobias My Lemtrada Journey: Observations at 18 Months After Round 2 It’s time for another update on how I’ve been doing with my Lemtrada (alemtuzumab) treatments. The bottom line is that I’m doing well. Lemtrada is a disease-modifying therapy (DMT) delivered in two stages. The first stage entails a series of five daily infusions, while the second stage involves…
October 28, 2019 Columns by Ed Tobias MS News that Caught My Eye Last Week: Cognitive Impairment, Genetic Variant Risk Factor, Protein Biomarkers, Gilenya Study Higher Intellectual Ability, Early-life Physical Activity May Protect Against Cognitive Impairment in MS, Study Suggests The finding that physical activity provides a protective effect for cognitive abilities makes sense to me. I recently listened to a webinar discussing brain atrophy, which has a direct relationship with cognitive impairment, and…
October 25, 2019 Columns by Ed Tobias Am I Too Old for Aggressive MS Treatment? A question raised by neurologist Gavin Giovannoni on the Barts-MS blog lit up my radar recently. Dr. G asked whether “elderly” people with MS should be treated differently than those who are younger. The question arises because a case of progressive multifocal leukoencephalopathy (PML), a serious brain disease,…
October 21, 2019 Columns by Ed Tobias MS News that Caught My Eye Last Week: Injectable DMTs, Ofatumumab ‘Success Story,’ MS and Night Shift Work, MS Biomarker Study #ECTRIMS2019 ā Are Injectables Inappropriate for Active Relapsing MS Treatment? Injectable disease-modifying therapies (DMTs) have been around for a long time. I took part in a Phase 3 clinical trial for Avonex (interferon beta-1a) in the mid-1990s. These treatments were the only game in town back then, and…
October 18, 2019 Columns by Ed Tobias Pushing to Put a Symbol for Invisible Disabilities on Driver’s Licenses This is not the week to tell me how good I look … even if I look and feel good. The week of Oct. 13 is Invisible Disabilities Week. As we all know, multiple sclerosis (MS) can be as invisible as Casper the Ghost. Invisible Disabilities Week isn’t limited…
October 14, 2019 Columns by Ed Tobias MS News that Caught My Eye Last Week: Mavenclad and Ocrevus Use Rising in EU, Ampyra Patent Appeal Denied, Exercise and MS Pilot Study Mavenclad, Ocrevus Use Rising in EU as Injectables and Tysabri Decline, Spherix Reports I’m not surprised at reports that the use of Mavenclad (cladribine) and Ocrevus (ocrelizumab) is increasing in Europe, or that the use of injectable disease-modifying therapies appears to be declining there. Mavenclad and Ocrevus are approved…
October 11, 2019 Columns by Ed Tobias It’s Not All in Your Head Several days ago, the headline “It’s All in Your Head” jumped out at me. The author of the Journal of the American Medical Association article, Matthew Burke, is a neurologist at Harvard Medical School who specializes in neuropsychiatry. According to Burke, the problem of physicians telling patients that unexplainable…
October 7, 2019 Columns by Ed Tobias MS News that Caught My Eye Last Week: Rituximab vs. Ocrevus In this week’s column, I’ve changed the format a little to focus on one subject: rituximab. This is an approved cancer medication that some U.S. neurologists use as an off-label treatment for multiple sclerosis (MS). Rituximab is similar to Ocrevus (ocrelizumab). When the latter disease-modifying therapy (DMT) became available in…
October 4, 2019 Columns by Ed Tobias My Fortuitous Footwear Discovery: I Found the Right MS Shoes The other night, I had an MS dream. In it, I was able to lift my left leg as well as I can my right one, regardless of my weak hip flexor. I don’t usually know what’s triggered a dream, but this time I did: My Bioness L300 had…
September 27, 2019 Columns by Ed Tobias Taking Vitamin D for Your MS? Use It Wisely Many people with multiple sclerosis (MS) use vitamin D supplements. I’ve been popping a 2,000 IU tablet of vitamin D3 each morning for many years. And with good reason. Studies show that having an adequate blood level of vitamin D may lower a person’s risk of developing MS. Research…
September 23, 2019 Columns by Ed Tobias MS News that Caught My Eye Last Week: Ozanimod, Achtar Gel, Onset Age Progression Link, Glial Cells Could Differentiate MS Types In this column, I take a look at more exciting research from the ECTRIMS2019 conference this month. #ECTRIMS2019 ā Ozanimodās āKey Advantagesā May Lead to New First-line MS Therapy: Interview with Neurologist Jeffrey Cohen This year we’ve seen the approval of two new multiple sclerosis treatments in the United…
September 20, 2019 Columns by Ed Tobias Neuros Say that Flu Shots and Other Vaccines Are OK for Those with MS This is the time of year when my wife and I start thinking about getting our flu shots. We’ve already had the pneumonia and the older shingles vaccine and hope to soon update with the new shingles vaccine, Shingrix (recombinant zoster vaccine). These vaccines are OK with my neurologist and…
September 16, 2019 Columns by Ed Tobias MS News that Caught My Eye Last Week: Stem Cell Transplants, Remyelination Agent, Tecfidera Study, Plasma Exchange and Tysabri-linked PML It’s been a big week for interesting stories, as the annual meeting of the European Committee for Treatment and Research in Multiple Sclerosis (ECTRIMS) has just concluded. The conference offered much to engage healthcare professionals and researchers, but the following are some presentations that appealed to me as a multiple…
September 13, 2019 Columns by Ed Tobias Stem Cell Program That Treated Selma Blair Closes Its Doors Richard Burt, MD, the chief of Northwestern Medicine’s immunotherapy for autoimmune diseases division, is taking a sabbatical, and the stem cell program he has headed for many years, which treated a number of people with MS, is shutting down. Burt headed a Phase 3 clinical trial…
September 9, 2019 Columns by Ed Tobias MS News that Caught My Eye Last Week: Cancer Medication Slows MS, Vitamin D and Myelin, Targeting ‘Helper’ T-cells, Vaccination Guidelines Ofatumumab Better at Easing Relapse Rates and Slowing MS Progression Than Aubagio, Phase 3 Data Show Ofatumumab isn’t approved as a multiple sclerosis (MS) treatment. It’s a cancer medication that’s marketed as Arzerra. But in two clinical trials reported here, it did better than Aubagio at treating MS. Its…
September 6, 2019 Columns by Ed Tobias Social Cognition: Does It Impact MS Symptoms? Feeling tired, depressed, or anxious? Maybe it has to do with your social cognition. Social cognition involves empathy and recognizing the emotions that are revealed by someone’s facial expression. That expression may show fear or disgust. Or it may warn us of danger. Social cognition also involves the…
August 30, 2019 Columns by Ed Tobias Another Study Shows That Costs of Disease-modifying Therapies Are Zooming It probably comes as no surprise to you that the costs of some of the most popular MS medications have been soaring. A new study by researchers at the University of Pittsburgh reports that their list prices have more than quadrupled in a decade. And out-of-pocket costs rose even more.
August 27, 2019 Columns by Ed Tobias I Dreamed That I Was Walking When asleep, many people dream they can fly. Some dream about being naked in public, failing an exam, or (gasp!) about sex. Last night, I dreamed that I was walking. I have that walking dream a couple of times a year. I’m walking along and all of a sudden,…
August 26, 2019 Columns by Ed Tobias MS News that Caught My Eye Last Week: Rituximab Helps Reverse Boy’s MS, Top Secondary DMTs in Europe, Tricking Remyelination, Early MS Treatment Strategies Rituximab Leads to āDramaticā Recovery in Boy with Aggressive RRMS, Case Study Reports I dislike using adjectives such as “dramatic” when describing treatment results. I think they frequently blow things out of proportion. However, after reading about how this young boy in Greece responded to Rituximab as a “rescue…
August 23, 2019 Columns by Ed Tobias Are Your MS Disease-modifying Treatments Old School or New School? Choosing which MS medication to use is one of the most difficult decisions for someone with MS and their neurologist. After 39 years with MS, and with four disease-modifying therapies (DMTs) on my medical chart, I’m definitely on the hit-it-fast, hit-it-hard side of that treatment decision. So, I was…
August 19, 2019 Columns by Ed Tobias MS News that Caught My Eye Last Week: Dark Rimmed Lesions, Sativex in the UK, NHS Care Toolkit for Neurological Diseases, Wahls Diet Dark Rimmed Brain Lesions May Be Signal of Aggressive Disease, NIH Study Says Researchers in this study found that specific brain lesions, notable for their dark rims, may indicate that a patient’s multiple sclerosis is likely to progress quickly. They suggest that early detection of these lesions can help…
August 16, 2019 Columns by Ed Tobias MS Progression’s Speed Tagged to ‘Smoldering’ Brain Inflammation The presence of chronic active lesions in the brain may provide a clue as to how quickly multiple sclerosis (MS) symptoms will progress. Researchers at the U.S. National Institutes of Health (NIH) call these lesions “smoldering inflammation.” Their study, just published in JAMA Neurology, indicates that the more lesions…
August 13, 2019 Columns by Ed Tobias Keeping a Positive Attitude with Advocacy: Why I Write ‘The MS Wire’ This month marks the third anniversary of my column, “The MS Wire.” After writing two columns a week for most of those 156 weeks, it isn’t always easy to come up with fresh ideas. Tonight was one of those nights. With my deadline approaching, my well of ideas was…
August 12, 2019 Columns by Ed Tobias MS News that Caught My Eye Last Week: Solution for Lemtrada Complications, CBD Infusions, Vaccines and MS, Music and Exercise Autoimmune Complications Associated with Lemtrada Solved Using Anti-CD20 Therapies, Case Studies Suggest One of the concerns about the disease-modifying therapy (DMT) Lemtrada (alemtuzumab) is that it may raise the patient’s risk of developing a secondary autoimmune disease within seven years post-treatment. This small study suggests that the abnormal proliferation…