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 Can You do About Paying for MS Drugs?

multiple sclerosis expenses

If you’re having trouble paying for your MS drugs, 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 medications it will pay for). Or, it has decided that you must change from a brand name drug to a generic one. Sometimes the problem is that the person with MS…Continue Reading

Get Your COVID Vaccine as Soon as You Can

covid vaccine vials

The advice issued last week 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.” The new MS Society guidelines say that the two COVID-19 vaccines currently available in the U.S., both of which use an mRNA model, are “safe and effective.” The risk of contracting severe COVID-19 far outweighs any potential vaccination risks, they add.…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

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