The MS Wire - A Column by Ed Tobias

My wife and I recently returned from a long weekend in upstate New York, where we attended my college reunion. It was a biggie — my 50th — and had been delayed a year due to COVID-19. The sun was shining, and it felt like spring for the three days…

Deep Brain Stimulation May Help With MS-associated Tremors Deep brain stimulation (DBS) has been used to treat people with Parkinson’s disease and essential tremor, and in some cases, those with MS who have severe tremors, when other treatments have failed. The treatment involves implanting electrodes in the brain so…

Would you sign up for healthcare from the place where you buy books, bluejeans, and bagels? Amazon thinks you might, and the company is moving closer to becoming the doctor in your house, according to a report last month by Insider. Amazon has been dabbling in the healthcare business…

Ublituximab, Potential Relapsing MS Therapy, Up for FDA Approval Like Ocrevus (ocrelizumab) and Kesimpta (ofatumumab), ublituximab targets the CD20 protein that’s found on the surface of B-cells in the immune system. It then binds to it and kills the cell, reducing the number of cells that are attacking the…

People living with multiple sclerosis know that the medications used to treat it are expensive. According to the National Multiple Sclerosis Society, the median annual price of brand-name disease-modifying therapies (DMTs) last year was $91,835. Five of them carried a price tag of more than $100,000 a year. Many pharmaceutical…

Oral Fesoterodine Fumarate Can Ease Bladder Problems in MS This is a biggie for me since bladder problems have affected my quality of life for years. I recently switched my bladder medication hoping it would be a change for the better. The jury is still out. So, I’ll have…

I take a bunch of pills every day. Most of them are generics. I’ve used baclofen to treat my leg spasticity, oxybutynin for my bladder, and modafinil to fight fatigue. There’s also atorvastatin to keep my cholesterol in check, and levothyroxine to do the same for my…

Patients on Anti-CD20 Therapies Urged to Get COVID-19 Vaccine Some people being treated with disease-modifying therapies (DMTs) that reduce their CD20 B-cells have been concerned that their DMTs also reduce the efficacy of COVID-19 vaccines. According to this study, those DMTs, such as Ocrevus, Kesimpta, and Rituxan, do that.

Lately, I’ve been thinking about pain — specifically, how to count my pain. When I was lying on a treatment table while my physical therapist Richard manipulated my shoulder, he asked me to rate my pain, on a scale from one to 10. I’m sure many of you…

Risk of MS Relapse Not Increased by COVID-19 Vaccine, Study Finds This new information about one of the COVID-19 vaccines supports what doctors have been saying all along. So, why do some people continue to believe the vaccines raise the risk of a relapse? In my personal, nonscientific opinion,…

Lia Coryell says she wanted to die. According to The New York Times, after fighting COVID-19 last winter, Coryell 56, was hit with heart and kidney failure, pneumonia, and shingles. This was in addition to living with progressive multiple sclerosis. “I’ve had to fight this really dark demon that…

I wish I could walk a mile in my shoes, but even with a new pair, that’s not going to happen. My MS limits me to about 100 steps while using two canes and a functional electrical stimulation device strapped under my left knee. Because walking is so difficult,…

Ocrevus Reduces MS Relapse Risk, But Linked to More Hospitalizations As you can see from the first two paragraphs of this story, these hospitalizations occurred most frequently in older people with MS. Yet, as these researchers point out, the criteria for selecting the people who participated in Ocrevus’ clinical…

I’ve had pee problems for as long as I’ve had multiple sclerosis. Many folks with MS have issues, including urinary urgency, frequency, or both, bladders that don’t empty completely, or streams that don’t start when you need to go. There are medications to treat these problems. The best known…

Trial Will Test Ocrevus on Arm, Hand Function in PPMS A lot of the focus in MS treatment and clinical trials is placed on walking ability. It seems to me that only recently has attention been paid to above-the-waist disabilities. I know that many people with MS have problems…

Now that a third COVID-19 vaccine shot has been approved in the U.S. for immunocompromised people, and vaccine boosters are expected to be available to the general public sometime after Sept. 20, Walgreens and CVS have lost no time in offering the additional shot to those who qualify.

Trial Will Test Mavenclad for Advanced Progressive MS I often think that researchers have forgotten about people whose MS has progressed to an advanced stage. But MS patients who have moved into a wheelchair deserve treatment with a disease-modifying therapy as much as those who are just beginning their…

Can I survive without dessert? Can I live without ice cream, chocolate, and fruit pies, or with only a small amount of beef when I want a burger? The other day, my wife decided to start the ketogenic diet to try to lose some weight. I’m a skinny guy, so…

Risk of Severe COVID-19 Not Raised by Immunosuppressive DMTs Here’s the latest on whether disease-modifying therapies (DMTs) raise the risk of a person having a bad case of COVID-19 if infected with the novel coronavirus. Researchers report here that DMTs don’t increase that risk. But don’t confuse this information…

May I vent, please? In the five years that I’ve been writing this column, I don’t think I’ve ever used it to get something off my chest. But I need to today. It’s about an experience I had at a restaurant the other night. My wife and I went…

FDA Greenlights Stem Cells Trial Aiming to Improve Quality of Life I’m pleased every time I see stem cell research being approved. Hopefully, this will move us closer to approval in the U.S. for the use of stem cells as a treatment for MS. In this research, patients are…

Is orelabrutinib one of the next big MS therapies? Biogen is betting at least $125 million that it is. Orelabrutinib is an experimental oral BTK inhibitor (BTKi). BTKi’s are designed to selectively block an enzyme that’s important for the activation of B-cells and microglia. Some of those immune cells…

Skin Reactions ‘Frequent’ With Mavenclad, Real-world Study Finds I regularly see people posting on social media about having a rash or itchy skin, or losing hair while taking Mavenclad. Researchers in this study say these side effects aren’t mentioned in the risk management plans for this disease-modifying therapy. Therefore,…

“Do you need help?” The question came from a 30-something woman after I’d finished loading some cartons into the back of my SUV. I automatically replied, “No thanks, all done.” But lifting and loading isn’t an easy job for me. My upper body strength is good, but my legs are…

Biogen Strikes Deal for Orelabrutinib, Now in Phase 2 Trial BTK inhibitors, such as orelabrutinib, are designed to selectively block the activity of an enzyme important for the activation of B-cells and microglia. Some of those cells drive the abnormal immune responses that attack the central nervous systems of…

People with MS who are using cannabis take heed: A research letter published in May in JAMA Network Open reports that calls to poison control centers about people intentionally or inadvertently using plant-based or processed cannabis products have been increasing over the past several years. Public health officials are…

Sativex Eased MS Spasticity as an Add-on Therapy A reader in Belgium told me he has used Sativex for a couple months. He reported no dramatic improvements in his symptoms, but he said the spasticity in his right leg decreased, and he was in a much better mood to…

My grandson, John, turned 5 in May, and my granddaughter, Hayden, turned 7 in June. I love being their Poppy, but I wish their Poppy didn’t have MS. I was diagnosed with MS in 1980, just over a year after our son, Geoff, was born. He and our grandkids have…

Could a cannabis spray be just what the doctor ordered to treat our MS symptoms? I’m talking about Sativex (nabiximols), which has been developed as a treatment for moderate and severe MS spasticity. Sativex combines THC, the chef intoxicant in marijuana, with CBD, marijuana’s nonpsychoactive component. It’s sprayed…

MIND Diet May Protect Brain Tissue in MS The Mediterranean Diet is one of several diets that proponents believe slow their MS progression and in some cases help to improve some symptoms. However, the National Multiple Sclerosis Society says that “evidence of effectiveness [of any MS diet] is…