News, info and tips for living with multiple sclerosis

An Ocrevus Patient Dies of PML. Need we Worry?

Ocrevus and PML

The journal JAMA Neurology recently reported that a 78-year-old man with progressive multiple sclerosis died after being diagnosed with the brain disease progressive multifocal leukoencephalopathy (PML). The man, diagnosed with MS about 30 years ago, had been treated for two years with Ocrevus (ocrelizumab), and had no previous immunotherapy.  As of last December, 10 cases of PML had been reported in people being treated with Ocrevus since the U.S. Food…Continue Reading

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

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

Worrying About MS Treatment Side-effects?

MS treatment

Over the past few of weeks, warnings have been issued about side effects of two MS treatments. First, the U.S. Food and Drug Administration warned about a “slight” risk of seriously worsening MS symptoms if someone who is using the disease-modifying therapy Gilenya (fingolimod) stops using it. The FDA’s alert said the worsening symptoms could “result in permanent disability,” but the alert failed to provide details about how rare these…Continue Reading

Serious Medications Need Serious Care Coordination

Ocrevus (ocrelizumab) is a serious disease-modifying therapy. It has the potential to deliver a major blow to a patient’s multiple sclerosis, but it also carries the possibility of severe side effects. The protocol for Ocrevus requires different doses on different infusion dates, following a specific treatment schedule. It’s also very expensive. This all shouts for the need for serious care coordination! Jamie’s care coordination problems I was concerned when Jamie, who…Continue Reading

Ocrevus, Hope and a Suicide Postponed

Ocrevus and PML

Several months ago, I wrote a column in Multiple Sclerosis News Today about Andrew Barclay. Barclay died in an assisted suicide in December. He’d had multiple sclerosis for many years. Colin Campbell is a 56-year-old MS patient who lives in Inverness, Scotland. He also wanted to die. In fact, he was scheduled to end his own life, with help, on June 15 at a suicide clinic in Switzerland. But he…Continue Reading

Good Test Results for Primary-Progressive MS Drug Ocrelizumab

My neurologist tells me “the buzz is good” about ocrelizumab. The investing web site Motley Fool calls it “the revolutionary Multiple Sclerosis drug you’ve never heard of.” Ocrelizumab, which Genentech hopes to market under the name Ocrevus, is special because it’s designed to treat primary-progressive, as well as relapsing-remitting, MS. How does it work? I’m not a scientist, but after reading a lot of scientific writing here’s my best attempt to…Continue Reading