News, info and tips for living with multiple sclerosis

What’s the Impact of Ocrevus’ Shortened Infusion Time?

Ocrevus and PML

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, of course, but it’s important. Unlike shots and pills, infusion treatments can require a significant amount of time. So, will the U.S. Federal Drug Administration’s December approval of a shortened infusion time for Ocrevus (ocrelizumab) be a big deal for people…Continue Reading

Could This Lawsuit Threaten Patient Assistance Programs?

Patient assistance programs

The manufacturer of Copaxone is the target of a US Justice Department lawsuit and its outcome could affect many of us who receive copay help for our medications. The legal case involves the interaction between pharmaceutical companies and nonprofit organizations that provide grants to people who need help paying for their treatments. For example, when I couldn’t afford the monthly copay for Aubagio (teriflunomide) several years ago, I qualified for…Continue Reading

My MS Routine Changes – Blame it on COVID-19

N95mask. Blame it on covid-19

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 months ago. My walking is slower. I’ve postponed my semiannual neurologist visit. Blame it on COVID-19. But my decisions have…Continue Reading

MS Meds or Food: A Tough Choice

ms meds or food

Forced by medication costs to choose between regularly taking their medications or buying groceries, some people with multiple sclerosis are choosing the groceries. Some are skipping doses and others have stopped taking their disease-modifying therapies (DMTs) entirely. This troubling news is reported in a survey by the National Multiple Sclerosis Society (NMSS). The results show that about 40 percent of those surveyed have skipped or stopped taking their DMTs because…Continue Reading

Stem Cell Transplants Versus DMTs – A trial seeks participants

Stem cell therapy

People with multiple sclerosis have been waiting for this: A full-scale clinical trial testing the effectiveness of stem cell transplans as an MS treatment. The trial is being conducted by the U.S. National Institutes of Health, and it’s enrolling people with MS at several centers in the United States and one in the United Kingdom. The U.S. has been behind the curve when it comes to approving stem cell transplants for…Continue Reading

Are You Willing to Accept More Risk Than Your Neuro?

Weighing risk

As more high-efficacy disease-modifying therapies (DMTs) are being made available, people with multiple sclerosis have to decide how much risk they’re willing to accept in exchange for the treatment’s potential benefits. It’s a tough decision, not made any easier if a patient’s neurologist is unwilling to accept much risk. According to researchers at the University Medical Center Hamburg-Eppendorf in Germany, when it comes to one highly effective DMT, patients are…Continue Reading

My Lemtrada Journey: Round 2 Plus 18 Months

Lemtrada journey

It’s time for another update on how I’ve been doing with my Lemtrada journey. The headline is I’m doing well. Lemtrada (alemtuzumab) 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 three daily infusions, given a year later. The medication has shown some success in slowing or halting MS disease progression in many, and has…Continue Reading

How Old is Too Old for Aggressive MS Treatment?

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, was recently reported in a 76-year-old MS patient. According to the blog, citing Roche Pharmaceuticals, the man has had MS a long…Continue Reading

Flu Shots and Vaccines: Neuros Say Benefits Outweigh Risks

New vaccine guidelines from neurlogists' association

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 my primary care doctor. They’re also OK with the American Academy of Neurology. The academy has updated its vaccine guidelines…Continue Reading