“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…

Among multiple sclerosis (MS) patients starting on Lemtrada (alemtuzumab), an early decrease in the leakiness of the blood-brain barrier (BBB) is associated with a lower likelihood of disease activity after two years, according to a new study. The blood-brain barrier is a cellular divisor that regulates which substances…

‘Hidden’ Disabilities Fairly Common at RRMS Diagnosis, Study Finds This headline doesn’t report the full nature of this story. In addition to being “fairly common,” the research concludes that disease-modifying therapies (DMTs) have little effect on these so-called “hidden disabilities.”  I don’t agree with that conclusion. Most of…

“‘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…

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…

“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…

“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…

AB Science OK’d to Start Masitinib Phase 3 Trial for Progressive MS Many of us with multiple sclerosis (MS) have been waiting for another treatment for progressive forms of MS. I hope this brings us another step closer to one. Masitinib is an oral medication that works by blocking…

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…

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 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…

“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…

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…

Lemtrada (alemtuzumab) may slow the progression of multiple sclerosis (MS) and lower the conversion rate of relapsing-remitting MS (RRMS) to secondary progressive MS (SPMS), a long-term study suggests. The results showed that patients converting to SPMS — in which a person’s disability gets steadily worse — were older,…

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…

Ocrevus Use Rises Among New Starters with RRMS, Loses Ground to Other Therapies in PPMS Ocrevus (ocrelizumab) bolted out of the starting gate after it was approved for use in the U.S. about three years ago. However, though its use by people with relapsing forms of multiple sclerosis continues…

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…

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…

Seven months after starting a safety review of Lemtrada (alemtuzumab), the Pharmacovigilance Risk…

Treatment with Lemtrada (alemtuzumab) is associated with the death of patients with relapsing-remitting multiple sclerosis (RRMS) more often than previously reported and appears to be most common during the first month, according to a European review. The study, “Adverse events with fatal outcome associated…

Cyxone Launches Phase 1 Trial Assessing T20K for MS This trial caught my eye because even though it’s a small, early trial, T20K is a medication derived from a plant. Animal studies have shown that the treatment can inhibit cytokines, substances that mediate inflammation. Cyxone launched the first-in-human Phase…

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.

New research suggests that rising blood pressure might be predictive of intracranial hemorrhage — bleeding in the brain, a serious and sometimes fatal condition — in people with multiple sclerosis (MS) who are receiving treatment with Lemtrada (alemtuzumab). The study, titled “Intracerebral haemorrhage during…

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.

Although the use of highly effective disease-modifying treatments (HETs) in patients with relapsing-remitting multiple sclerosis (RRMS) has increased, they still represent a minority among the treatment strategies used, according to a study. The study, “Trends in the use of Highly Effective Disease Modifying Treatments in Multiple Sclerosis…

Patients with relapsing-remitting multiple sclerosis (RRMS) who switched to infusions with Sanofi Genzyme’s Lemtrada (alemtuzumab) report increased satisfaction with treatment and improvements in health-related quality of life, according to…

The European Medicines Agency (EMA) is reviewing safety data for Sanofi Genzyme‘s Lemtrada (alemtuzumab) following new reports of serious treatment side effects. Lemtrada is a humanized monoclonal antibody used to slow disease progression in adult patients with relapsing-remitting multiple sclerosis (RRMS). It works by blocking the activity of…

Non-contrast MRI Effective in Monitoring Progression of MS, Study Shows There’s been increased interest in the risks versus the benefits of using gadolinium to make lesions more visible on an MRI. The U.S. Food and Drug Administration issued an advisory last year raising the level of…

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 …

This probably won’t come as a surprise to you if you’re on Medicare: It’s getting harder to obtain approval for many of the disease-modifying therapies (DMTs) prescribed for people with multiple sclerosis (MS). I see complaints about this all the time on social media. Now, research reported in…