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 effective at reducing multiple sclerosis relapses and inflammation. It slows progression, and in some cases, halts it. A few people report that it even eases some of their MS symptoms. I’m one of them, but I’m getting ahead of myself.
The Lemtrada journey isn’t easy
The standard Lemtrada treatment is two series of infusions spaced a year apart. The first series is given back to back over five days, and the second is given over three days. I began this journey in December, 2016.
Each treatment session lasts about eight hours, beginning with an administration of pre-medications before an IV dose of Lemtrada, and followed by a post-infusion watch period afterward.
Some pretty serious fatigue issues can follow treatment. They can happen on and off for a long time. For me, and for many others I know of, this fatigue lasted for about six months after the first and second treatment rounds. I also had a bout of strep throat, a urinary tract inflection, and severe leg pain. A common cold that should have lasted about three days lasted three weeks.
Serious side effects also can occur, including thyroid problems, which are the most common. Fortunately, none of my side effects have been serious. Monthly blood and urine tests are required for four years following the second round to try to nip any of these problems in the bud.
A journey worth taking
It’s now three years after my second round of infusions and all is better than I expected. My MS hasn’t progressed. My brain MRIs look the same as before I began the treatments. I’m walking slightly faster on the 25-foot test. My finger dexterity has improved on the nine-hole peg test. I’m sharper cognitively. My fatigue is less, so much so that I’ve stopped using the anti-fatigue medication Provigil (modafinil).
I’m also able to sleep six straight hours without having to get up for a bathroom run. I’m sleeping a full seven or eight hours on more nights than I have in years. I’ve also become nearly regular in the bowel department. Those bladder and bowel improvements make life a whole lot better.
I’ve read anecdotal reports of people who have had greater symptom improvements than mine, but others don’t seem to have done as well. Everyone’s Lemtrada journey is a little different.
Some neurologists believe Lemtrada is most effective when begun early in someone’s MS journey. But a 2020 study by Israeli researchers changed some minds when it reported that even people with an Expanded Disability Status Scale score of 4.8 benefited from the medication. Heck, Lemtrada has helped me, and I’m 72 years old with an EDSS score of 6.5!
There’s no doubt in my mind that despite the valleys, curves, and bumps of the past, my Lemtrada journey has been a trip worth taking.
(A version of this post first appeared as my column on the MS News Today website.)
