An Update on My Lemtrada Journey, 3 Years After Round 2

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by Ed Tobias |

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Where has the time gone?

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 this 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 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.

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 lasted for about six months after the first and second treatments. 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.

A trip worth taking

My follow-up report three years after the second round of infusions is excellent. 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. And best of all, my bladder and bowel symptoms have improved.

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 improvement than mine, but others don’t seem to have done as well.

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.

You’re invited to visit my personal blog at www.themswire.com.

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Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to multiple sclerosis.

Comments

Anita Simon avatar

Anita Simon

I’m so happy for you. Any improvement is a blessing. Is Lemtrada for relapsing MS?

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Ed Tobias avatar

Ed Tobias

Thanks, Anita.

Lemetrada is intended for relapsing and active progressive MS but it's also being used to treat people, like me, with inactive progressive.

Ed

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