News, info and tips for living with multiple sclerosis

My Lemtrada Journey: Slowing on the Final Stretch

Lemtrada journey

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 each phase separated by a year. The medication wipes out most of the cells in an MS patient’s immune system with…Continue Reading

Older People With MS Need More Respect

older people with ms

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 attention from researchers and from some neurologists. So, as I approach my 73rd birthday, I have to tip my cap to doctors Eva Strijbis, Anne Kerbrat, and John Corboy for some respect they’re showing to us older people…Continue Reading

My Lemtrada Journey: Three Years After Round 2

Lemtrada journey

It’s been three years since I completed my second round of Lemtrada (alemtuzumab) infusions. So, it’s time to take another look at where my Lemtrada journey has taken me. Lemtrada is a monoclonal antibody treatment that wipes out rogue B- and T-cells in the immune system. These cells attack the central nervous system of people with MS. The immune system then rebuilds itself, hopefully with normal cells. Lemtrada is highly…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

My Lemtrada Journey: Two Years Post Round 2

My Lemtrada journey

Happy Lemtrada anniversary to me! It’s been two years since I completed my second round of Lemtrada (alemtuzumab) infusions, and I’m happy to say that the results have been good. Not everyone’s experience with Lemtrada will mirror mine, but I don’t think I’m much different than most. My brain MRI hasn’t shown any new, enhanced, or active lesions since before my first treatment, although that had been stable for several…Continue Reading

My Lemtrada Journey: Round 2 Plus 18 Months

Lemtrada journey

It’s time for another update on how I’ve been doing with my Lemtrada journey. The headline is I’m doing well. Lemtrada (alemtuzumab) is a disease-modifying therapy (DMT) delivered in two stages. The first stage entails a series of five daily infusions, while the second stage involves three daily infusions, given a year later. The medication has shown some success in slowing or halting MS disease progression in many, and has…Continue Reading

Balancing Lemtrada’s Risk Versus Rewards

Lemtrada risk-benefit

There’s been a lot of risk versus rewards chatter on social media following the recent decision by the European Medicines Agency to initiate a safety review of Lemtrada (alemtuzumab). The EMA has restricted use of the medication within the European Union while that review is underway. That’s worrying some people who are using Lemtrada or who are about to start. For me, it’s really a question of risks versus rewards. The EMA…Continue Reading

Worrying About MS Treatment Side-effects?

MS treatment

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