News, info and tips for living with multiple sclerosis
I slept through the night last night. Recently, I’ve managed to do that on most nights. No 4 a.m. bathroom trips for me! That’s a big deal. There was a time when I’d get up two or even three times during the night for a bladder run. Sleeping seven or eight hours straight is huge. I’ve been troubled by bladder frequency and urgency for many years during the four decades…Continue Reading
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
It’s been five years since I began treatment with the MS medication Lemtrada. Now, my Lemtrada journey is done, and it’s been quite a trip.
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
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
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
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
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
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