living with MS

MS patients who start treatment at a younger age, and whose condition requires hospitalization, are more likely to stop treatment, a Canadian study reports. The research, published in the journal Dovepress, dealt with the main reasons Canadian patients quit first-line injected disease-modifying therapies, or DMTs. It was titled “Persistence to disease-modifying therapies for multiple sclerosis in a Canadian cohort.” DMTs can reduce MS activity, but patients must stick with them in order for them to be effective. “There is currently a paucity of clinical trial data on what happens to individuals when they discontinue DMT," the researchers wrote. "However, recent preliminary evidence from observational studies suggest increased relapses and disability in those who discontinue DMT." Researchers sought to identify MS patients at higher risk of discontinuing treatment. They looked at Manitoba Province's medical database to identify the types of drugs MS patients were taking, and for how long. The analysis covered 721 patients who received injected beta-interferons or Copaxone between 1996 and 2011, and whom doctors followed for at least a year. Teva manufactures Copaxone, whose generic name is glatiramer acetate. The mean age of the patients in the study was 37.6 years, and 74.2 percent were women. Researchers defined a discontinuation of a DMT as a 90-day or longer gap in treatment. A third of the patients were treated with beta-interferon-1b, either Bayer HealthCare's Betaferon/Betaseron or Novartis' Extavia. It was the first such therapy available in Manitoba. Twenty-three percent of patients received beta-interferon-1a, either Biogen's Avonex or Merck's Rebif. And 21 percent received Copaxone. The median time before a patient discontinued a DMT was 4.2 years. Although 62.6 percent of patients discontinued treatment at some point, 57.4 percent either reinitiated it or switched to a different DMT. Patients who were on DMT at least a year were more likely to stay with it than those who stopped in the first year. Importantly, patients who started a DMT at a younger age were more likely to stop taking it than older patients. “Our results are also consistent with previous work examining persistence for other chronic medication classes, including statins, antihypertensives, bisphosphonates, and oral antidiabetic agents, where the risk for discontinuing drugs declined in a linear fashion with age,” the researchers wrote. The team also found that 16 percent of patients had to be hospitalized overnight, with 3 percent of the cases due to MS-related complications. And these hospitalized patients were more likely to stop their DMT treatment earlier, the researchers said. Summing up, the team said: "Subjects who were younger when starting a DMT, had prior MS-related hospitalizations, were more recently diagnosed with MS, or had a greater lag time between their MS diagnosis and DMT initiation were more likely to discontinue therapy." Although "not all of the factors identified with discontinuing DMT" can be modified, "they may help practitioners enhance MS care by identifying individuals who may be at particular risk for DMT discontinuation," the researchers concluded.

Just when I thought I had experienced every multiple sclerosis (MS) symptom possible, another one emerges: sciatic nerve pain. It can happen to anyone, but it is also associated with MS. A couple of months ago, I woke up with a sharp knife-type pain on the upper back side…

I don’t normally go in for trends. For example, I don’t own a single pair of skinny jeans. I’ve never tried a Unicorn Frappuccino. I’m not on Instagram or Snapchat. I didn’t participate in the Ice Bucket Challenge. And I refuse to use the words “doggo,” “pupper,”…

So, I recently signed up to join a new and much closer exercise class. The previous drive of nearly an hour each way had proved to be beyond my range. Actually doing exercise when I got there seemed bonkers! But I haven’t been there as of yet ― my…

It’s been a little over six months since I completed Round 1 of my Lemtrada infusions, so it’s time again to ask myself, “How am I doing?” The answer: I’m not sure. For many years, my brain MRI has remained unchanged. I can’t remember the last time…

(Editor’s note: Tamara Sellman continues her occasional series on the MS alphabet with this first of two columns about terms starting with the letter “F.”) When it comes to multiple sclerosis, mastering an understanding of the disease means you need to mind your Ps and…

How can you care for your MS when a loved one is ill? You want to be able to care for others despite your own daily struggles. As unpredictable as MS is, what is predictable is that your life will be touched by the…

Last week, I shared details of Everyday Matters, a program by the National Multiple Sclerosis Society. This self-directed, multi-week program uses the principles of positive psychology. The readings, lessons, and exercises need not be completed in a particular order, but I am going to start my exploration of…

Though my first brush with MS came in 2000 or so, I wasn’t diagnosed until December 2013 with primary progressive MS. Shortly after the diagnosis, I began scouring the internet for information about the disease and how to live with it. Sound familiar? I found…

Religion and spirituality are personal, delicate issues for many. Various schools of thought exist, and I haven’t the desire or the ability to deem one more important than the other. Writing about religious and spiritual matters is at times taboo in an often secular world. I can, however,…

During a routine exam with my neurologist recently, I asked her a question I’d never thought to ask before: “Why do you order regular MRIs of my brain, but not of my spine?” Interestingly, within a few days of my exam, a Harvard Med School study was…

In case you missed them, here are some news stories that appeared in MS News Today that caught my eye over the past week. **** Harvard Study Finds No Link Between Clinical Exams and MRIs in Some MS Patients I’m really not surprised…

The Multiple Sclerosis Association of America (MSAA) has released three new resources for people with multiple sclerosis (MS), available for free as both printed and online versions on MSAA’s website. According to a press release, the three new resources are: A cover story in the latest edition of MSAA’s…

It’s summer in the U.K., and it’s hot. That’s cause for celebration for everyone but us. It’s actually the hottest June day since 1986. Heat immediately spikes my fatigue. For some of us, the cold does the same. Thankfully, not me — I get the winter off. According…

Several months ago, I wrote a column 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…

Shared decision-making between patients and their doctors and healthcare providers was considered a critical step in the process of treating multiple sclerosis (MS), according to an article published in the journal Practical Neurology. The article “Shared Decision-making in Multiple Sclerosis Management” was written by Amy Perrin Ross, a board-certified…

Multiple sclerosis patients taking Tecfidera, or dimethyl fumarate, were more productive at work than those on Copaxone or beta-interferon therapies, according to a study. Tecfidera also increased patients’ quality of life, researchers said. The study covered patients with relapsing-remitting multiple sclerosis, or RRMS. The four beta-interferon treatments were Avonex, Betaseron, Rebif,…

(Editor’s note: Tamara Sellman continues her occasional series on the MS alphabet with this second of two parts on terms starting with the letter “E.” Read the first part here.) When it comes to multiple sclerosis, mastering an understanding of the disease means you…

Heidi Redl was in the physically demanding job of ranching when a doctor told her in 2004 that she had multiple sclerosis. Reluctant to give up her physical capabilities without a fight, the horseback rider and runner from Williams Lake, Canada, searched for unconventional as well as conventional MS treatments. In…

Many years ago, not long after my MS diagnosis, my cousin gave me a “gratitude journal.” At that time, I was all too aware of what I was not grateful for. The thought of giving thanks was daunting. But the journal suggested writing down just three things a…

Earlier this year, I visited a physical therapist I’d seen way back in my running days to devise a home workout routine that could help me address not only foot drop-related issues, but also a routine I’d actually do. One of the challenges I have with PT is doing…

Catheterization training in the hospital did not prepare me for how to manage on a daily basis. In my last column, I described how I ended up in the hospital unable to urinate at all. In this column, I will cover more details about what I learned along…

Once again, over the past couple of weeks, we’ve been blasted with headlines trumpeting a new MS discovery. Last month there were headlines about an inexpensive acne drug that supposedly could be used to reduce the symptoms of early MS. This month it’s headlines about a “cure”…

Many of the symptoms of multiple sclerosis feel random, and can be down right terrifying. I’ve recently been suffering from a scary MS symptom: slurred speech, also known as dysarthria. I open my mouth expecting the words I have chosen to appear. Instead, I slur and stutter…

The National Multiple Sclerosis (MS) Society has selected research highlights from a recent MS conference in an effort to help make living with the disease less burdensome. Presentations from the May 24-27 annual meeting of the Consortium of Multiple Sclerosis Centers (CMSC) in New Orleans — which ranged from advice on smartphone apps to diet…

Like millions of other fans, I happily plunked down $13 to launch “Wonder Woman” into blockbuster status on its opening weekend. In fact, I was so excited that I purchased dress-up kits for my gal pal, Amy, and me. Yes, as 40-somethings, we attended a film resplendent…

Back in the day, I always wanted to be a columnist. That day was so long ago it was before sunrise. In my youthful naivety, I never thought about generating an idea a week. I also never considered it would be about my travails with an illness. Still,…

I was in Boston last week at the headquarters of Sanofi Genzyme. Yes, the big drug company. They brought together several people they consider to be “digital influencers” to pick their brains about what’s on the minds of people like you, who read what we write. Sanofi…

Editor’s note: Patient columnist Laura Kolaczkowski attended the 31st annual Consortium of Multiple Sclerosis Centers conference in New Orleans. We’re facing a major problem in the near future due to a shortage of researchers for multiple sclerosis, according to Jerry Wolinsky, MD, Bartels Family and Opal…

I just spent a week in Boston at an industry conference. I realized I’ve mastered the art of preparing for long-distance excursions since my last flare-up four years ago. Business trips used to be so intimidating to me. Now, I’m much better at packing,…