March 5, 2019 Columns by Ed Tobias Two Different Approaches to Providing Online MS Help I received an email recently from the National Multiple Sclerosis Society in the U.S. promoting a searchable database of “credible doctors and resources.” A few days later, I happened to run across another online multiple sclerosis (MS) information service hosted by the HealthCare Journey website. They call it…
February 11, 2019 Columns by Ed Tobias MS News that Caught My Eye Last Week: Marijuana and MS, MS Solutions Contest, MS Diagnosis Delays, Medicare DMT Costs Medical Marijuana āCan Help Everyone,ā Says Director at Maryland Cannabis Facility Keeping in mind that the person quoted in this article, Mr. Castleman, is growing medical marijuana to make money, I wouldn’t expect him to say anything else. On the other hand, I firmly believe that some forms of…
February 8, 2019 Columns by Ed Tobias DMT Approvals for Medicare Users Decline While Costs Rise, Study Shows This probably won’t come as a surprise to you if you’re on Medicare: It’s getting harder to obtain approval for many of the disease-modifying therapies (DMTs) prescribed for people with multiple sclerosis (MS). I see complaints about this all the time on social media. Now, research reported in…
February 1, 2019 Columns by Ed Tobias Why Aren’t You Using an MS Medication? I see a lot of answers to the question about why people stop, or refuse to start, an MS medication. “Thinking of stopping the…meds. Sick of the shots and how they hurt to take them” “I stopped all of them….all multiple times. It…
January 29, 2019 Columns by Ed Tobias New Study Supports Hitting MS Fast and Hard The question of how quickly to start a disease-modifying therapy (DMT) after a multiple sclerosis (MS) diagnosis is one that I frequently see when I browse online. It goes hand in hand with questions about which DMT is best to start with. There are many things to consider when…
January 25, 2019 Columns by Ed Tobias MS News that Caught My Eye Last Week: HSCT vs. DMTs, Mindfulness for MS, Ocrevus and T-cells, Pregnancy Guidelines Blood Stem Cell Transplant Better than DMTs at Reducing Risk of Disease Progression in RRMS Here’s more evidence that hematopoietic stem cell transplant (HSCT) works better than some disease-modifying therapies (DMTs) at reducing multiple sclerosis (MS) progression. In this study, only three of 52 patients in the…
January 4, 2019 Columns by Ed Tobias MS Treatment Decisions Can Cause a ‘Gambler’s Dilemma’ One of the toughest decisions facing someone with MS is whether to begin treatment with a disease-modifying therapy (DMT). Equally tough, I think, is deciding which DMT road to travel ā because there are three roads that can be followed. One path starts you on a simple, first-level medication. These…
December 17, 2018 Columns by Ed Tobias MS News that Caught My Eye Last Week: Cannabis, Switching Interferons, Brain Stimulation by Smartphone, Lipoic Acid MS Patients Report Beneficial Effects of Cannabis with Few Side Effects, Survey Shows This survey agrees with what I’ve found in my limited experience with cannabis (in my case, CBD oil). A small amount can ease some of my spasticity and help me to get a better…
December 14, 2018 Columns by Ed Tobias Pregnancy, DMTs, and MS: A New Study Many years ago a woman I know who has multiple sclerosis (MS) became pregnant. After her child was born her MS became significantly worse. There have been many studies on the impact of pregnancy on someone with MS, with most concluding that the number of MS relapses are reduced…
December 11, 2018 Columns by Ed Tobias Consensus Lacking on How MS Medications Are Prescribed in the UK Living in the U.S., where disease-modifying therapies (DMTs) seem to be prescribed as a matter of course to people with multiple sclerosis (MS), I was surprised that it doesn’t seem to be the case across the pond in the U.K. An article just published on the Multiple…
November 8, 2018 Columns by Jennifer (Jenn) Powell MS and Your Immune System: ‘Tis the Season for the Flu Fall is my favorite season. I love the change in temperature, the falling of amber leaves, trading flip-flops for loafers, the din of football games, and the joy of the holiday season. There is so much to enjoy, yet this particular Sunday I am sick. I have acquired the…
November 8, 2018 News by Santiago Gisler Pregnancy Briefly Lowers MS Relapse Rates and Treatment Reliance, Real-world Study Shows Relapse rates in women with multiple sclerosis (MS) decline during pregnancy, as does the use of disease-modifying therapies, before both adjust to pre-pregnancy levels again, a large U.S. study based on real-world data shows. The study, āRelapses and disease-modifying drug treatment in pregnancy and live birth…
October 1, 2018 Columns by Ed Tobias MS News that Caught My Eye Last Week: MRI Signal, Cost-effective DMTs, Age Benefits, Generic Ampyra Often-overlooked MRI Signal May Aid in Early Diagnosis of MS, Other Brain Conditions, Study Suggests A part of an MRI scan that radiologists call a “background signal” is what’s being looked at. It’s usually ignored because the signal doesn’t seem to change even when a patient is…
August 17, 2018 News by Marta Figueiredo, PhD Most MS Patients OK With Intravenous Treatment Conditions, Study Suggests Most patients with multiple sclerosis (MS) are satisfied with the conditions of their intravenous therapy (administered directly into the bloodstream) and are very aware of the therapy’s safety,Ā according to a small Macedonian study. Also, establishing a specialized infusion center would substantially increase intravenous treatment satisfaction and adherence. The study, ā…
May 29, 2018 Columns by Ed Tobias Pressure in the UK Helps Lower MS Therapy Costs. But What About the US? In the United States, the government can do very little to control the costs of our expensive MS medications. In the United Kingdom, it’s a different story. The U.K. has an organization called the National Institute for Health and Care Excellence, better known as NICE. NICE provides healthcare…
May 21, 2018 Columns by Ed Tobias MS News that Caught My Eye Last Week: PML Treatment, Gilenya for Kids, Rituximab, and an MS trial that is Enrolling Complications from Gilenya Treatment Managed Successfully, Case Report Says This wasn’t a minor complication. It was a version of PML, a brain disease that can be fatal. PML is also a known side effect of Tysabri, so the report of a successful treatment should be important to…
May 18, 2018 Columns by Ed Tobias A Pediatric MS Medication Gets the OK Until about a week ago, no medication was approved in the U.S. to treat patients with pediatric-onset MS (POMS). Now there is one. The Food and Drug Administration (FDA) has given its OK to use Gilenya (fingolimod) to treat relapsing MS in children and adolescents starting at…
April 27, 2018 Columns by Ed Tobias New DMT Guidelines Are Good for MS Patients The American Academy of Neurology (AAN) has just released some new guidelines about when to begin, change, and end disease-modifying therapies (DMTs) that are used to treat MS patients. The guidelines, published on April 23, encourage aggressive treatment when symptoms of MS first appear. They’re also patient-centric. And…
April 16, 2018 Columns by Ed Tobias MS News that Caught My Eye Last Week: New Lemtrada Side Effect, MS Cooling Vests, and Drug Infection Risks Acute Acalculous Cholecystitis Linked to Lemtrada Use in RRMS Patients, FDA Reports The makers of Lemtrada have added the possibility of another serious side effect to the warning carried on the therapy’s label. The addition follows a Food and Drug Administration review that discovered a potentially serious…
April 9, 2018 Columns by Ed Tobias MS News That Caught My Eye Last Week: Online Meditation, Coordination of MS Care, a Walking Drug Test, Stopping Your DMT Online Meditation Course Seen to Help MS Patients Manage Symptoms in Clinical Trial Can someone use a website to learn how to meditate, and then do it well enough to have their MS symptoms improve? Well, maybe. This small study reports that patients who completed an online…
April 4, 2018 News by Diogo Pinto Two Factors Lead to Better Outcomes when Disease-modifying Therapies Stopped, Study Finds A lot of people withĀ multiple sclerosisĀ take disease-modifying therapies to reduce the inflammation associated with the disease ā but in many patients, the treatments’ effectiveness wanes at a certain points. When that occurs, the question is whether to stop taking these treatments, known as DMTs. A study reports that patients’…
March 23, 2018 Columns by Ed Tobias It Shouldn’t Be This Hard to Get Our MS Medications I got a phone call from my MS One to One nurse, Lynn, today. One to One is the patient support service provided by Sanofi Genzyme for patients on the biotech company’s MS disease-modifying therapies (DMTs) Lemtrada (alemtuzumab) and Aubagio (teriflunomide). Lynn called to ensure that all…
November 17, 2017 News by Alice MelĆ£o, MSc Nurses, Physicians’ Assistants Prescribe Antibody-based Therapies More Than Neurologists, Survey Shows U.S. nurses and physicians’ assistants prescribeĀ antibody-based disease-modifying therapies to their multiple sclerosis patients more than neurologists do, a survey indicates. The trend has been for the doctors to stick with interferon therapies, the study said. Antibody-based disease-modifying therapies are also known as monoclonal antibodies. They are designed to harness the…
November 16, 2017 Columns by Laura Kolaczkowski A JC Virus Primer There is often alarm and confusion about the JC virus, how we get it, and what it means to people with multiple sclerosis. This is my quick primer to help address these questions in a very basic way. What is the JC virus? The first person identified with this…
November 2, 2017 Columns by Laura Kolaczkowski Ocrevus Q&A, Part 1 Editor’s Note: First in a two-part series on readers’ comments about Ocrevus (ocrelizumab). I switched disease-modifying therapies and began treatment with Ocrevus (ocrelizumab)Ā in June. I previously wrote about my reasons for switching, my experiences with the first two doses, and more recently, about any…
October 2, 2017 Columns by Ed Tobias MS News That Caught My Eye Last Week: Scooter-User Falls, Aggressive Treatment, and Brain Inflammation Falls Common Among Wheelchair, Scooter Users in People with MS, Study Reports It’s happened to me. I’ve gone over backwardĀ when I tried to “gun” the throttle of my lightweight scooter when its rear wheels were up against a door threshold. And my heavier scooter can have a…
July 21, 2017 Columns by Ed Tobias Do MS Patients in the UK Get the Right Treatment Quickly Enough? About two years ago, a report by the European Multiple Sclerosis Platform stated that only 21% of MS patients in the United Kingdom were receiving any kind of disease-modifying therapy. This is compared to 40% in France and 69% in Germany. Now, the U.K. branch of pharmaceutical giant Sanofi has published a report of its own, "The Missing Pieces." The report tries to answer, "Why is this so?" Here are some of the answers that were received online from a small group of healthcare professionals and MS patients: Nearly three-quarters of U.K. healthcare professionals think that people with MS face delays in starting on disease-modifying treatments (DMTs). Nearly one-quarter of MS patients there reported being unaware of some treatments that could help delay the onset of disability. Only half of people with MS say disability was discussed with their healthcare professional when they were first diagnosed, yet 69% of the healthcare professionals say it was discussed. Only a third of those patients say that "disability" is discussed in their regular MS appointments. Two-thirds of people with MS say that maintaining independence is their main treatment goal, followed by reducing relapses. The report also says that healthcare professionals believe the primary reason that DMTs are slow to be prescribed is lack of access in the U.K. to neurologists who specialize in MS. And, it says, 62% of MS specialist nurses and 47% of MS specialists thought this delay is also because of a shortage of healthcare facilities needed to deliver DMTs. Now, it needs to be noted that this survey involved only 100 MS specialist healthcare professionals and 120 MS patients in the U.K. And, as mentioned earlier, the survey was conducted by Sanofi, which claims to be the fourth largest pharmaceutical company in the world. Sanofi makes two big-time MS drugs: Aubagio (teriflunomide) and Lemtrada (alemtuzumab). Naturally, it has a vested interest in seeing that MS patients are treated with DMTs. (Full disclosure: I recently was compensated by Sanofi Genzyme to attend a meeting of "digital influencers" that the company held at its U.S. headquarters.) But drug sales aside, a case certainly can be made for treating MS patients with DMTs quickly after patients are diagnosed, and many drugs currently on the market have shown that they are able to modify the course of MS. And there's a case to be made about a need for better patient-healthcare provider communication. So, my question is: How do MS patients in the U.K. feel about access to DMTs? And to MS care, in general? Is this small report correct about the lack of knowledge by patients about their treatment options? Is it correct about the lack of MS specialists and resources in the U.K.? Do MS patients outside of the U.K. have similar concerns?
July 6, 2017 Columns by Laura Kolaczkowski Ocrevus and Me Iāve done it! I made the treatment switch that so many people with multiple sclerosis are talking about: I said goodbye to Tysabri (natalizumab) and am now on Ocrevus (ocrelizumab) as my disease-modifying therapy (DMT). I went through 56 monthly infusions (or maybe more, I’ve…
January 13, 2017 Columns by Ed Tobias MS Drug Treatment Costs Start the Year Headed Up I don’t think this will surprise you. Multiple sclerosis drugs, some of the most expensive drugs there are, are getting even more expensive. Drug industry analyst Eric Schmidt, quoted in the Boston Business Journal, reported that Biogen began the new year by upping the price of Tecfidera,…
September 21, 2016 News by Patricia Silva, PhD #ECTRIMS2016 – MS Patients on Oral Gilenya Stick Longer with Treatment in Phase 4 Study A recent study showed that after one year, the majority of multiple sclerosis (MS) patients taking oral Gilenya (fingolimod) therapy stuck with their treatment, while a large proportion of thoseĀ usingĀ injectable disease-modifying drugs did not. The data, presented at the European Committee for Treatment and Research in Multiple Sclerosis (ECTRIMS) 2016…