News, info and tips for living with multiple sclerosis
Have you ever heard of the word “polypharmacy”? I saw the word for the first time today. It’s generally defined as taking many medications together. There’s been debate over how many is “many,” but a number generally used is five or more. That describes me. I take six prescription drugs every day. Four of them are directly related to my MS, the fifth is to moderate my cholesterol, and the…Continue Reading
My wife and I joined our son and his family on a tour of a Southwest Florida nature preserve a couple of weeks ago. It required riding on an old school bus turned swamp buggy for a little over an hour and a half. There were plenty of gators, wild hogs, egrets, and storks in the swamp — but no restrooms. So, the bumpy buggy ride really put my bladder…Continue Reading
I see a lot of reasons why people stop, or refuse to start, an MS medication. “Thinking of stopping the…meds. Sick of the shots and how they hurt to take them” “I stopped all of them….all multiple times. It takes too long for an appointment and I tapered off “ “Half the s**t will kill you” “My body and my choice” “The side effects are worse than the disease” Forty…Continue Reading
How quickly to start a disease-modifying therapy after an MS diagnosis is a question that I frequently see when browsing online. It goes hand in hand with which DMT is best to start with. There are many things to consider when making that decision. Here’s a study that may help you weigh the benefits and risks hitting your MS hard and fast. Any DMT is better than none The study,…Continue Reading
There are more than a dozen disease-modifying therapies available for treating MS. Some are shots, some are infusions, and some are pills. Some are more effective than others. The marketing intelligence company Spherix Global Insights regularly surveys which of these treatments are being used by neurologists and what’s influencing their selection. Here’s what the latest Spherix quarterly survey shows about what’s being prescribed. Just over half of the 100 neurologists…Continue Reading
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
I’ve just passed the second anniversary of my Lemtrada (alemtuzumab) treatment. My first infusion round was the first week of December 2016. Round 2, delayed by four months, was done last April. So, it’s time to update my Lemtrada journey for you. Lemtrada, in case you’re not familiar with this treatment, has been described by some as “HSCT lite.” The medication kills specific B- and T-cells that are thought to play…Continue Reading
MS medications are expensive in the United States. We all know that. We also know that less expensive meds can be found in places like Canada and Mexico. So, here’s a novel idea from the nonprofit health insurance provider PEHP, which covers state workers and their families in Utah: Pay those patients to buy their expensive meds south of the border. As Erin Alberty reports in The Salt Lake Tribune, the…Continue Reading
Many of us have received help to pay for our MS medications. Now it’s possible that patient assistance programs, including copay help, could be threatened. A recent article in the The Wall Street Journal reports that U.S. government prosecutors are looking into whether some pharmaceutical companies’ patient assistance programs are on the wrong side of the law. These include direct copay assistance, donations to foundations that help patients pay for…Continue Reading
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