Lemtrada: Hoping My Drip Stops Here

I’m finished with my second round of Lemtrada (alemtuzumab). Hopefully, this will be the final round of this disease-modifying therapy (DMT) for me, and my final MS treatment of any kind.

Though some have required more, most people treated with Lemtrada receive only two rounds. The first round consists of five infusions over five days. The second round, a year later, is three infusions over three days. If it works “as advertised,” Lemtrada will stop a patient’s MS progression. If it works better than advertised, as it has for more than a few, some MS symptoms actually improve.

I’m doing well, so far

I feel sharper cognitively and I think that my legs are a bit stronger and my walking is slightly better. My sense of feeling in my feet has also improved, a bit. The last brain MRI that I had showed no new, active, or enlarging lesions, but that’s been the case for me for many years.

Lemtrada is a journey

We Lemmies like to say that Lemtrada treatment is a marathon, rather than a sprint. Its benefits may not be apparent right away. It’s also a roller coaster ride. One month after my first round of infusions, I wrote:

“Month two post-infusion began with a good lab report, but also with an appearance of the up-down fatigue monster. On several days it was very tough getting out of bed. Other days I felt good when I woke up, but then I took a dive in mid-afternoon and had to head back for a nap for a couple of hours. Many nights involved getting up for multiple “pee trips,” which didn’t help my energy level. Add to this one middle of the night and one middle of the afternoon episode of fever and chills (which were handled with 800 mg of Ibuprofen) and it’s made for an uncomfortable ride.

“One day I finally listened to my body and spent the whole day in bed. It helped, but it didn’t stop the coaster.”

It turned out that I’d picked up a low-grade strep infection, which caused a fever that was responsible for some of those problems.

At four and a half months, my wife asked, “Do you think you’re walking better?” She’s a retired physical therapist, and her knowledgeable eye had spotted a little improvement. She was right.

There can be risks

Lemtrada can cause some side effects that can be serious. They include autoimmunity, where immune cells attack healthy cells or organs,  an increase in the likelihood of some forms of cancer and some thyroid problems. Because of this, patients must have their blood and urine tested every month for four years. This close monitoring improves my comfort level; my neurologist should be able to spot any problems that are brewing and, hopefully, nip them in the bud.

My journey continues

The roller coaster hasn’t stopped, but it’s definitely slowed. There have been aches and pains that come and go, particularly in my lower back, butt, and thighs. But my good days far exceed the bad. And, the reward outweighs the down days and the risks.

So, I’m buckling in once more, expecting the roller coaster to pick up speed again. I’m crossing my fingers that Lemtrada will indeed be my final DMT and that the IV drip will stop right here. I’ll keep everyone posted in future columns.

One bit of disclosure: About a year ago, I participated in a meeting of the Lemtrada MS Digital Advisory Board, for which I received a fee and had my expenses paid in exchange for allowing them to pick my brain. You can read about that experience here.

(A version of this post first appeared as my column on www.multiplesclerosisnewstoday.com)