alemtuzumab

Fighting Fire With Fire: The War Between Lemtrada and My MS

“So can you lift me up/ And turn these ashes into flames/ ‘Cause I have overcome/ More than words will ever say.” — Kate Voegele My relapsing-remitting multiple sclerosis (RRMS) diagnosis stole my life from me. The reverberations of this unwelcome thunderbolt were astounding. Coming to terms with a…

Pain and Positivity: My Experience With Plasmapheresis

“‘Cause I would never break your heart/ I would only rearrange/ All the other working parts will stay in place.” — Biffy Clyro, a Scottish rock band If you’ve spent any time in a hospital, you know that it never gets completely dark. There’s always a light flickering somewhere, a…

Crossing the Lemtrada Finish Line

I’m marking a big anniversary this month. It’s been four years since I finished the second round of treatment with Lemtrada (alemtuzumab), my final disease-modifying therapy (DMT). That means that, after about 60 monthly blood draws, I’m finished being stuck. Lemtrada is usually a two-phase series of injections, with…

The Building Blocks of Becoming a Busy Bee

“Serendipity. Look for something, find something else, and realize that what you’ve found is more suited to your needs than what you thought you were looking for.” — Lawrence Block When the world was thrown into lockdown at the dawn of COVID-19, I was already an old hand at functioning…

The Furious Fire of Heat Sensitivity

“In order to rise from its own ashes, a phoenix must first burn.” — Octavia E. Butler You know that feeling of waking up in a strange place, and it takes a second to remember where you are? Imagine that coupled with not being able to move from the neck…

Study Finds Lemtrada Safe for MS Patients With Other Autoimmunity

Other autoimmune conditions, particularly those characterized by the presence of anti-TPO antibodies, should not preclude patients with multiple sclerosis (MS) from receiving treatment with Lemtrada (alemtuzumab), according to an analysis of pooled data from clinical trials and post-market data. The study, “Autoimmunity and long-term safety and efficacy…

My Lemtrada Treatment, 5 Years Later

It was five years ago, Dec. 5, 2016, that I scootered into the office of Dr. Heidi Crayton, my neurologist, and plopped into a soft, brown leather recliner. Day 1 of Round 1 of my Lemtrada (alemtuzumab) infusions was about to begin. I’d prepped for this day: two days…

I’m Sleeping Better These Days, but Why?

I had a great night’s sleep the other night. I fell asleep quickly and slept straight through the night for nearly seven hours. When I got up in the morning, I felt refreshed, which is exceedingly rare these days. Plus, it even happened a few more times in the past…

Overcoming the Loneliness and Isolation of Aggressive MS

“Hurricane MS,” which is how I refer to the aggressive nature of my MS progression, happened quickly and mercilessly. I am aware that my case is particularly unusual, given how aggressive its onset was. This is one of the reasons I feel a sense of purpose in sharing my story…

Let’s Treat Older MS Patients With More Respect

As comic Rodney Dangerfield might have said, older people with MS “just don’t get no respect.” By older, I mean those of us who are 55 and up. By respect, I mean from researchers and some neurologists. So, as I approach my 73rd birthday, I have to tip my cap…

Will Reduced Treatment Time Keep Ocrevus Competitive?

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. Unlike shots and pills, infusion treatments can require a significant amount of time. That’s why the U.S. Federal Drug Administration’s December…

And the Biofilm Goes to …

The medical profession must be sick and tired of patients diagnosing themselves via the wonders of the internet. But as a patient who’s sick and tired, you eventually have to. Medicine is full of orthodoxies that are incredibly hard to shake. When you find yourself at the edge of these…

Stem Cells Versus DMTs: MS Treatments Go Head to Head

People with multiple sclerosis have been waiting for this: A full-scale clinical trial testing the effectiveness of stem cell transplantation 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…

Some Neuros Make DMT Choice Harder than It Should Be

More than 15 disease-modifying therapies (DMTs) are available in most high-income countries to treat multiple sclerosis (MS). DMTs come in the form of injectables, infusions, and pills. Some are new, others have been around for more than 20 years. Some have a greater possibility of serious side effects than others. Some DMTs are highly effective at slowing or stopping disease progression; others, not so much. It's a difficult choice to make. So, why are some neurologists making it harder? These doctors are handing their patients a medication "shopping list" and telling them to pick one. I see this topic discussed regularly in social media MS groups. Recently, a woman who needs to switch DMTs wrote that her neuro gave her a "handful of (medication) brochures" and told her to go home and decide which medication she wanted. Really? DMT selection shouldn't be do-it-yourself I've been using DMTs for more than 20 years. I've been on Avonex (interferon beta-1a), Tysabri (natalizumab), Aubagio (teriflunomide), and Lemtrada (alemtuzumab). I always had the final say on which med I wanted to use, but I never had to make that decision alone without guidance from my neuro. That's the way a doctor-patient relationship should work. While the final DMT decision should always rest with the patient, your neurologist has the responsibility to use his or her knowledge of the meds and of you to guide you in your choice. Some factors that you both need to consider are: Is the disease progressing quickly or slowly? Your lifestyle: Do you work full time? Do you have a good support system and reliable transportation? If an injectable DMT is in the mix, can you handle injecting yourself monthly, three times a week, or every day? How much possible risk are you willing to accept in exchange for the potential of a better result? An additional and criticial consideration is whether you can afford the treatment. My impression is that cost is rarely thought of or talked about before most physicians prescribe a medication. I see nothing wrong with asking your doctor how much you can expect to pay out-of-pocket. (Or, for the doctor's office to ask this of your insurance company). If you feel your neurologist doesn't know all of these things about you I suggest that you be proactive and fill in any blanks. The final choice is yours With all of that knowledge, you can probably narrow down the most appropriate DMT candidates for you to three or four. Then it's time for your neuro to clearly explain why those are the best choices and to review the pros and cons of each. Then, and only then, it's time for you to make the final choice. And your decision might be not to use any medication. That wouldn't be my choice, but it might be yours. After all, you're the one who'll be living with whatever choice you make. What has been your experience? Was your neurologist helpful when selecting a DMT or were you given "a handful of brochures" and told to do-it-yourself? How did you choose? You're invited to visit my personal blog at www.themswire.com.

My MS Has Been No Sweat. Has Yours, Too?

I worked up a little sweat when I was exercising the other day. It was just a tiny bit on my forehead, but it was something I hadn’t felt in many years. I’ve lived with MS since 1980, and before now, I can’t remember the last time I felt sweaty.

Early Use of High-efficacy DMTs of Long-term Benefit to MS Patients, Real-world Study Reports

Multiple sclerosis (MS) patients given intensive disease-modifying therapies early in their disease course have more favorable long-term outcomes than those treated with an escalating regimen, real-world data shows. The study, “Clinical Outcomes of Escalation vs Early Intensive Disease-Modifying Therapy in Patients With Multiple Sclerosis,” was published in the journal …