My Lemtrada Journey, 2 Years After My Second Round

Ed Tobias avatar

by Ed Tobias |

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Ponesimod, telemedicine

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 years before I began Lemtrada. More importantly, my symptoms haven’t worsened. In fact, some have improved a bit.

I generally feel better. I’m more alert and my physical fatigue is less than it was before my treatment. I have some lower back and hip pain, but it’s not as severe as it was a year ago. Nighttime foot and leg cramps are easing a little.

My bladder problems have improved, which is a biggie. For years, I’d wake up about three times a night for a trip to the bathroom. But since the start of this year, I’m getting up only once on most nights. A few times a month, I actually sleep through the night a full eight hours!

During the daytime, I have less urgency and frequency. When I urinate, I usually feel like I’m emptying my bladder completely.

Bowels are also better. I’ve gone from a “regular” of every three to five days to actually being pretty regular, every day or two.

The neuro tests agree

Various neurological tests confirm that it’s not all in my head. I walked slightly faster on my last two 25-foot walking tests. My neurologist said my gait has improved. My speed is better on the nine-peg test that rates finger dexterity. These improvements aren’t dramatic, but they are improvements.

Ups and downs

As I’ve written in several columns since my Lemtrada journey began, the ride hasn’t been entirely smooth. Bumps have occurred, especially during the first six months after each series of infusions. (The standard Lemtrada treatment involves five consecutive days of infusions followed by three consecutive days a year later.) But those bumps involved only minor problems such as fatigue, a strep infection, and a urinary track infection.

What gets the credit?

I can’t say for sure why I’m doing better. I’m exercising more frequently. I’m drinking more water than I have in years. I’m eating a little better. I’m also in a fairly low-stress environment. Is that why I’m improving, or is it because of the Lemtrada treatments? Would I be stable without any treatment?

This is MS, so who knows? Does it really matter? Not to me.

You’re invited to visit my personal blog at


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Lynda Viet avatar

Lynda Viet

I wonder if Lemtrada is considered effective for SPMS in Canada ?

And what are the prerequisites tout received the treatment ?

Thanking you in advance for taking the time to answer my questions.



Ed Tobias avatar

Ed Tobias

Hi Lynda,

According to the MS Society of Candada Lemtrada is approved for RRMS. I don't see any indication, unfortunately, that it's approved for any other MS diagnosis there. I'd suggest that you ask your MS healthcare professional.


Stephen Malouf avatar

Stephen Malouf

Just want to share a note as I was on Lemtrada from January 2018 and ended in January 2019. It has worked for me as well as my last appointment with my doctor at CHUM showed possitive improvement. My results are quite similar to "Happy Lemtrada anniversary to me"
I also chenged my diet (to combat MS) and I think we ALL need to eat healthier.

BTW : Lemtrada was approved in late 2017 in Quebec so I guess I was one of the first to switch from Tsabri to Lemtrada as recommended by the CHUM team.

Ed Tobias avatar

Ed Tobias

Hi Stephen,

I'm glad that you're doing well on Lemtrada. It seems as if you only were treated with one round, however. So, I'm curious to know why you, apparently, didn't continue with the second round.



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