The MS Wire - A Column by Ed Tobias

All of the stories this week are from the ACTRIMS 2021 Forum, an MS research conference held virtually Feb. 25–27. #ACTRIMS2021 – COVID-19 Vaccines Safe for MS Patients, Minimally Affected by DMTs My wife and I received the second shot of the Moderna vaccine last week. (You can read…

“Ooooops!” Actually, I spit out a shorter, one-syllable word as I took one of the scariest tumbles I’ve had in 40 years of living with MS. But this is a family column. My last scary fall a few years ago happened from a sitting position, and I fell onto…

Stories marked #ACTRIMS2021 are by members of the Multiple Sclerosis News Today team, who reported on this annual conference of MS researchers, held virtually this year due to COVID-19. #ACTRIMS2021 – 30 Minutes in Sun Each Day Lowers MS Risk in Children Can it really be this…

This is disturbing and, unfortunately, not surprising. More than 50% of people with advanced multiple sclerosis reported they’ve been mistreated by a family member or friend who cares for them, according to the results of a survey published last September by researchers at the University of California, Riverside. Much…

Drop in PML With Tysabri Use in Sweden Likely Due to Risk Management Plan I’m JCV-positive, so I’m at risk for PML if I’m being treated with Tysabri. And I was treated with Tysabri for seven years without a problem. That, I believe, is because my neurologist carefully followed…

If you’re having trouble paying for your MS medications, you’re not alone. I regularly see social media posts from people whose insurance has changed or whose insurance company has suddenly dropped a medication from its formulary (the list of meds it will pay for). Or, it has decided that you…

National MS Society Urges DMT Dosing Changes for COVID-19 Vaccinations The National MS Society has revised its COVID-19 vaccine recommendations first issued about a month ago. The guidelines still say the Moderna and Pfizer vaccines are considered safe for people with MS, including those using disease-modifying therapies, or DMTs.

It’s a good thing my wife, Laura, is persistent. Thanks to her tenacity, we’ve both been able to get our first shots of the Moderna COVID-19 vaccine. According to the pharmacist who gave us our shots, in two weeks we should be about 60% protected from the SARS-CoV-2 virus…

FDA Approves Plegridy as Intramuscular Injection for Relapsing MS A common patient complaint about Plegridy has been that its subcutaneous injection procedure results in injection site reactions. This new formulation is delivered into the muscle, rather than under the skin. The needle is longer, but Biogen pharmaceuticals thinks the…

My left hand was numb and weak when I was first diagnosed with multiple sclerosis. For years after that, symptoms above my waist seemed just as prevalent as those below it. Yet, there were no tests being used that measured my waist-up disability level — nothing equivalent to the…

Tecfidera Safe and Effective Over Long Term in Children With RRMS, Trial Shows In my view, too little attention has been paid to treating children and teens with MS between the ages of 10 and 18. Though things seem to be improving, only one disease-modifying therapy, Novartis’ Gilenya (fingolimod),…

A medical website’s headline screamed, “Breakthrough Multiple Sclerosis Vaccine Shows Impressive Results In Study.” The New York Daily News joined in, highlighting a potential “breakthrough” vaccine. Other media outlets also were using similar adjectives earlier this month. Unfortunately, it’s normal media hype. I suspect some of it was was…

Clene Awaits US Patent Covering Gold Nanocrystals’ Use in Treating MS This is a different approach to MS treatment. It uses very tiny crystals to produce a chemical reaction. It is hoped that this reaction will protect neurons and help to generate myelin. So far, there have only been…

I love the car I drive, but I’ve hated going to the dealer to get my car serviced. In the four decades that I’ve lived with MS, my walking has deteriorated to the point where I use a scooter if I have to walk more than 75 feet. If I…

Public-private Partnership Will Assess Therapy Potential, Effects of CBD Have you tried using CBD to treat your MS? I have. I’d hoped it would ease my leg spasms. Some people say it helps, but neither drops under my tongue nor salve rubbed onto my legs seemed to help me.

The advice issued Tuesday by the U.S.-based National Multiple Sclerosis Society about COVID-19 vaccination couldn’t be clearer: “Get your vaccine as soon as it is available to you.” New MS Society guidelines say that the two COVID-19 vaccines currently available in the U.S., both of which use an mRNA…

Study: Past Long-term DMT Use Tapers Risk of Current MS Progression Since being diagnosed in 1980, I’ve used four disease-modifying therapies (DMTs), starting with Avonex (interferon beta-1a) in the late 1990s. I haven’t had a true flare since shortly after my Avonex treatment began. My disease has progressed, but…

The answer to whether Amazon, in partnership with a pair of financial giants, can make healthcare more accessible and less expensive for its workers is: Apparently, it can’t. About two years after rolling out a project known as Haven, the plug is being pulled. The idea had been for…

One of the key considerations when choosing a disease-modifying therapy (DMT) is how much it will disrupt your life. It’s one of several factors that need to be evaluated. Unlike shots and pills, infusion treatments can require a significant amount of time. That’s why the U.S. Federal Drug Administration’s December…

Stem Cell Therapy Shows 2-year Benefit for Progressive MS Patients in Phase 1 Trial Stem cell studies always catch my eye. This very small study involves people treated with their own bone marrow, which was collected and expanded to give it the ability to modulate the MS immune response…

Are you sitting down? I am, but I’ve been doing too much of that this year. For the past six months, I haven’t been using our community exercise room. I haven’t been able to swim. I haven’t gone outside that much. I’ve become a couch potato, and you know why:…

MS Patients Urged to Enroll in Clinical Trial Assessing Chronic Fatigue Treatments My “MS Wire” column 10 days ago reported on a study of MS fatigue treatments that compared three medications with a placebo. The study found that none of the medications were much better than the placebo.

Do you plan to get a COVID-19 vaccine? I do.  One is now available to some residents of the U.K., and approval in the U.S. of one or more likely will happen soon. Though the U.S.-based National Multiple Sclerosis Society has said only that people with MS should consider…

Review Study Examines Factors That Affect MS Patients’ Quality of Life What affects the qualify of your life as someone who lives with MS? Fatigue is at the top of my list, followed by difficulty walking. Now, COVID-19 plus gray, winter weather have added a bit of depression. So,…

I’ve been tired all day, which is nothing new, as fatigue and multiple sclerosis go hand in hand. It’s been one of my primary symptoms since I was diagnosed in 1980. To counter it, I’ve taken Provigil (modafinil) for many years. Initially, taking 100 mg in the morning helped…

Tysabri Affects Immune System Beyond Known MS Target, Study Finds Tysabri (natalizumab) slows multiple sclerosis progression by blocking some immune cells from entering the central nervous system, where they attack the myelin coating of nerves. Yet this study shows that Tysabri may also significantly reduce the number of proteins…

Smartphone Typing Patterns May Be Tool for Monitoring MS Progression, Study Finds This is an interesting concept that makes sense. Like the nine-hole peg test that some neurologists use to test finger dexterity, and like some apps that attempt to measure this, monitoring how quickly, and in what manner…

The temperature’s dropping. The wind is whipping. It’s time for my wife, Laura, and me to head south, leaving cold, uncomfortable Maryland for the welcoming warmth of southwest Florida. Or is it? Though I once swore I’d never become a snowbird, a few years ago, we spent a week on…

Neurofilament Light Levels at First MS Event Can Predict Long-term Brain Atrophy Researchers are looking at a protein that’s released into the body’s fluids when neurons become damaged. They hope it will help them predict — as far as 10 years down the road from the first indication of…

The Multiple Sclerosis International Federation (MSIF) has issued new recommendations about how people with MS should adjust their daily lives because of the coronavirus pandemic. The MSIF, a network of national MS societies from around the world, first issued COVID-19 recommendations last spring. But much has been learned…