The MS Wire - A Column by Ed Tobias

MSAA Opens ‘COVID-19 and MS Pathfinder’ Online Informative Platform Information about MS and COVID-19 is dynamic and regularly changing. This has been particularly true about how to handle disease-modifying therapies (DMTs). The website mentioned in this story tries to keep up with these changes while covering multiple subjects ranging…

I’d just gotten out of bed the other morning and was headed to the bathroom using just one cane when I tried to step over a dog toy on the floor. I went down slowly onto the carpet, so it was really no big deal. No harm, no foul, but…

B-Cells Infected by Epstein-Barr Virus Linked to MS Relapse Risk in Study I usually steer clear of mouse studies. Mice lie and monkeys exaggerate, some researchers say. But this is another piece to add to the growing pile of evidence that there’s a great big link between multiple sclerosis…

July is Disability Pride Month. Now, don’t slam me right away for writing this, but I don’t think we need a month highlighting disability pride — just like I don’t think we need a month in October spotlighting that we have rare diseases, especially because to me, multiple sclerosis…

PROTXX, University of Alberta Collaborate to Develop Remote Healthcare Platform for MS Patients As more and more neurologists turn to telemedicine for routine patient visits, I expect we’ll see more of the type of technology being developed here. This group is working on something that goes further than what…

NICE Does Not Favor Adding Mayzent to NHS England for Active SPMS Currently, the only disease-modifying therapy approved for use in the National Health Service is Betaferon (interferon beta-1b). That’s a 20-year-old treatment considered to be one of the least effective of the DMTs. NICE concedes that clinical trials…

It’s been a few weeks since I’ve written about the impact that COVID-19 is having on people with MS. Since then, the picture has changed — not a lot, but enough for the MS International Federation to modify its recommendations for that illness, people with MS, and…

Gilenya May Help Control Severe Respiratory Disease in COVID-19 This story caught my eye, but not because of the possibility that Gilenya may help someone recover from COVID-19. It caught my eye because this information may give false hope to some people. Some doctors think that at a…

A couple new mobile apps for people with MS have caught my attention. Icompanion is among the best symptom and treatment trackers I’ve found. BelongMS combines patient forums with the ability to ask questions of healthcare specialists. Icompanion Several mobile apps allow users to enter information about how…

Note: A story mentioned in this column, “Prime Signs Agreement With EMD Serono to Improve Mavenclad’s Cost-benefit Value,” was updated on June 15, 2020, to clarify that the agreement allows for possible reimbursement for Prime’s health plan clients, not patients…

Are you tired? Really tired? Me, too. Most of us with multiple sclerosis are. How many is most? A small new study of 44 people with one of the progressive forms of MS found that the answer is a little over 86%. (I’m surprised the number isn’t higher.) They…

FDA Extends Review of Ofatumumab for Relapsing MS to September The U.S. Food and Drug Administration (FDA) was expected to make a decision about ofatumumab, a self-administered injection of a monoclonal antibody, by this month. Now, it looks as if we’ll be waiting until fall. Ofatumumab is already approved…

By my unofficial count, disease-modifying therapy No. 19 has just become available to people with multiple sclerosis in the U.S. The U.S. Food and Drug Administration (FDA) approved Zeposia (ozanimod) in late March. While pharmaceutical companies usually rush to make newly approved medications available to patients, with COVID-19 raging,…

Air Pollution of Urban Life Raises MS Risk, Study from Italy Suggests I grew up in New York City. It’s hard to get more urban than that. There weren’t many factories spewing pollution, but there certainly were a lot of cars, trucks, and buses, and I inhaled more than…

As I sit down to write this week’s column, it’s hard for me to concentrate. I’d planned to write about new MS mobile apps, but I can’t get my brain to focus on the task. I’ve been bragging about how I’ve been feeling sharper and able to concentrate better the…

Higher Risk of Vascular Disease Among MS Patients in the UK, Population-based Study Reveals You’d think that people with multiple sclerosis (MS) would be likely to have vascular disease due to the sedentary lifestyles many of us lead. But this large, lengthy study that looks at the records of…

My favorite line in the “Downton Abbey” TV series, uttered by the dowager played by Maggie Smith, is “What’s a weekend?” When you’re retired, if you’re working as a freelancer, or if like me you’re doing both, it’s easy to forget what day of the week it is. There are…

COVID-19 May Not Be Severe in MS Patients, Early Data from Italy Suggest Keep in mind that COVID-19 information is dynamic. New data about this illness appear every day. But all information I’ve seen so far agrees with this report, which indicates there’s no reason to think that living…

More support has been added to the belief that a link exists between the Epstein-Barr virus (EBV) and multiple sclerosis (MS). Epstein-Barr is one of the most common viruses, and most people become infected with it at some point in their lives. Frequently, it appears in childhood as…

FDA Approves Bafiertam, Tecfidera Bioequivalent, for Relapsing MS This is the second disease-modifying therapy (DMT) OK’d by the FDA in the past few months. Bafiertam is a delayed-release pill that’s similar to Tecfidera, but it’s said that it has fewer side effects. Unfortunately, its manufacturer hasn’t yet made it…

I love it when a multiple sclerosis treatment works well for someone. It doesn’t matter if that treatment is a medication, a form of physical therapy, or a diet. Good news is good news. So, when I saw this post on the Lemtrada for MS Treatment Facebook group, I…

New Nanosensor May Help to Diagnose MS at Early Stages My neurologist likes to say that “brain is time.” The sooner MS is treated the more time you can buy before the brain begins to deteriorate and MS symptoms appear. Being able to diagnose MS sooner means earlier treatment.

I canceled my April blood draw. The protocol for Lemtrada (alemtuzumab) requires lab work each month because the treatment can have serious side effects. But I spoke with my neurologist and we decided that I could skip it. Blame it on COVID-19. My legs are stiffer than they were two…

Shorter Ocrevus Infusion Time Up for Approval in US and Europe One of the drawbacks to infusion therapies is the time a patient spends in a recliner receiving the medication. For Ocrevus (ocrelizumab), nearly half a day is required for the infusion itself. Add on pre-infusion care and post-infusion…

It’s comforting to have this guy, with his floppy ears, stretched out next to me as I sit here writing. I don’t know why, but the fact that Joey, who is really my wife Laura’s cocker spaniel, has chosen to nap next to me is special. I’m not usually a…

Fampyra, Aid for Walking, Favored for Inclusion in NHS Scotland I used Ampyra, as Fampyra is known in the U.S., for about a year. It improved my walking a little, but I had to give it up due to cost. It’s been available in the States for a decade,…

Are people with MS more susceptible than the average person to the coronavirus that causes COVID-19? And if COVID-19 attacks them, what’s the likely course of their illness? What about COVID-19 and disease-modifying therapies? Doctors from around the world are collecting information right now to try to answer these…

New Database to Compile COVID-19 Data About People with MS and Related Diseases There are databases in the U.K. and other parts of Europe for tracking people with MS who have tested positive for COVID-19. This one is aimed at people in North America. This site will join the…

Happy Lemtrada anniversary to me! It’s been two years since I completed my second round of Lemtrada (alemtuzumab) infusions, and I’m happy to say that the results have been good. Not everyone’s experience with Lemtrada will mirror mine, but I don’t think I’m much different than most. My brain MRI…

Regular Exercise ‘Strongly Recommended’ to Ease Fatigue in MS This may seem like a no-brainer. But once upon a time, neurologists told people with MS to avoid exercise. They told us it would overheat us or make us tired. Over the past few years, this advice has flipped 180…