Crossing the Lemtrada Finish Line

Ed Tobias avatar

by Ed Tobias |

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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 the hope that the system will reconstitute itself without the rogue cells that attack our central nervous system.

Following the two series of treatments, the hope is that no further treatment will be needed. But because the medication can affect the liver and thyroid, among other things, the U.S. Food and Drug Administration requires monthly blood and urine testing for four years following the final IV drip.

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More roller coaster than highway

My Lemtrada journey began in December 2016 when the first infusion began on the first of five consecutive days. Round two, with three days of treatment, began in April 2018 after a delay of a few months because of a trip.

The Lemtrada highway is full of ups and downs. After my first series of infusions, I had all of the symptoms I was told to expect, including headache, body aches, fever, and fatigue. Some days I’d wake up feeling good, but other mornings I was really dragging. Some days I had to take midday naps. I had a fever with chills twice. These symptoms lasted about two months. After my second round of Lemtrada, I hit a severe fatigue wall at about six months.

On the other hand, my nighttime foot cramping improved and I seemed to be walking a bit better. My brain MRIs showed no activity, and I think my concentration was a little improved. I could feel whether my neurologist moved my big toe up or down. Best of all, my bladder frequency and urgency improved enough for me to go along with our grandkids on a 90-minute school bus ride searching for alligators in a Florida swamp.

How am I today?

Today, I think some things are better, while others, not so much.  

The best news is that my spastic bladder continues to control itself. I rarely need to get up more than once a night to empty my bladder, and a few times a month, I can sleep six or even eight hours straight. My bowels are more regular than they’ve been in years. (Too much information?)

The good news is that I have less fatigue and I’ve stopped using Provigil (modafinil) to stay alert. My nightly leg and foot cramping has been reduced. I can still feel in which direction my neurologist wiggles my toe.

The disappointing news is that my walking has slowed over the past year and a half, and I have some hip and lower back pain. It’s difficult to stand for more than a few minutes and very difficult to rise from a crouch, especially early in the morning.

Was it worth the journey?

Yes, indeed. The people who developed Lemtrada never promised it would improve anything. Clinical trials only showed a slowing of disease progression. Anything better than that was icing on the cake.

Who knows what kind of shape I’d be in without this treatment? Who knows how much of an impact the isolation, stress, and lack of exercise that resulted from the COVID-19 pandemic had on my MS?

Some say a person in his late 60s, as I was when this trip began, shouldn’t be treated with a risky and expensive disease-modifying therapy — we should just let our MS ride itself out. I say not me.

I’d already been treated with three other DMTs, none of which promised the efficacy of Lemtrada, and each with its own downsides. The prospect of no more DMTs after this was very appealing. My risk tolerance is high. After all, I’m an old guy. And even though it wasn’t promised, there was the possibility that some symptoms might improve. So why not shoot for the moon?

I’m glad I did.

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


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

Catherine avatar

Catherine

I'm so pleased to read your post, it's great news that you have this mostly positive outcome after treatment. I am on Ocrevus and as I am approaching 60, it has worried me that it might be my last chance on what is my third DMT. Your post has given me hope, something that is much needed with such an unpredictable disease. Stay well Ed!
Best wishes,
Catherine

Reply
Ed Tobias avatar

Ed Tobias

Thanks, Catherine.

I wish you well with your Ocrevus. I've heard a lot of good things about it over the years from others who are being treated with it.

All the best,

Ed

Reply
Paula Mieczkowski avatar

Paula Mieczkowski

Way to go! It was a road worthy of the destination.

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Ed Tobias avatar

Ed Tobias

Hi Paula,

Thanks for the cheer. Indeed, it was. And the road keeps going.

Ed

Reply
Gretchen Gehring avatar

Gretchen Gehring

I am so happy to read about an actual patient. My 44 year old daughter just had her first series, and you've given me some realistic expectations. Thank you!

Reply
Ed Tobias avatar

Ed Tobias

Hi Gretchen,

I'm glad what I wrote has helped you and I hope it will help your daughter as well. Be sure to click on the few links that I included. They link to earlier pieces that I wrote on Lemtrada and provide my details about my experience.

Ed

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Gary avatar

Gary

Congrats on finishing the monthly tests! As a fellow Lemtrada user, I cannot wait until that day comes for me. I've got a few more years to go though...

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Ed Tobias avatar

Ed Tobias

Hi Gary,

Thanks. And stick (sorry, horrible pun) with those tests. They showed some ups and downs on my TSH level for all five years. Knowing about them allowed me to correct my med and keep things steady.

Ed

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Tom Anderson avatar

Tom Anderson

Congratulations. Ed. Please keep us posted. You have more courage (or something) than I. Not to distract from your positivity, I just wanted to suggest to people, especially newbies, that bladder urgency or frequency is not a disabling condition. Sure, it's shocking when it first happens, so try the meds, but if you want to do what you want to do without a worry, wear a diaper. Use the rest rooms when you can. On a long trip. take a spare. Just don't drink an enormous amount of water or whatever. .

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Ed Tobias avatar

Ed Tobias

Thanks, Tom -

I don't know if I have courage but I try to live with my MS, rather than arm wrestle with it each day.

As for bladder stuff, it's been probably the thing that most affected my qualify of life over the past four decades. I know about meds, diapers and multi-pit stops. It's not disabling, but it can sure be a p-i-t-a.

I'll continue to write things as the journey continues. So, stay tuned.

Ed

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Daniel Grambo avatar

Daniel Grambo

I was first diagnosed in 1986, your notes are helpful. I used Avonex for 16 years, 2001 to 2016. My progression is near like yours, except my spasms are difficult most of the time. Keep up the good work. I enjoy your news. Thanks

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Ed Tobias avatar

Ed Tobias

Hi Daniel,

Thanks for your kind words. I'm glad you like what I write and hope it's useful. Best to you on your own journey.

Ed

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Pam Lowing avatar

Pam Lowing

I was a test subjects (#12) for Lemtrada (names Campath back then) before the FDA approved it for use in MS. There were two groups in the USA for the stage 3 double-blind clinical trials back in 2003 or 2004. One group was located in Grand Rapids, Michigan, the other in Texas somehwere. I was using Rebif at the time of receiving the invitation from my neurology office. So glad I did!

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Ed Tobias avatar

Ed Tobias

Hi Pam,

Thanks for leading the way for the rest of us. I was a test subject in the Phase 3 trial for Avonex, way back in 1995. I wound up on the placebo bu they ended the trial early and put all of us on the real stuff. Avonex, Betaseron the Compaxone were all we had back then. We've come a long way.

Ed

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Amber W avatar

Amber W

Thank you for the update! I am approaching Lemtrada round 2 (set for this August.)
I am a (relatively) young 36 year old, and my neuro and I decided to take the plunge and go for Lemtrada very early on in my disease. I handled the infusion well (had fatigue) but have felt great since. I am nervous about the follow up MRI though.
Reading positive accounts like yours gives me hope! Learning to emotionally prep for the difficulties while having hope and confidence I can get through them is the goal.
Thank you!

Reply
Ed Tobias avatar

Ed Tobias

Hi Amber,

I'm glad what I wrote is useful and I hope you clicked on the few links that I inserted. They lead to columns that I wrote over the past five years that have more details about my experiences. Good luck with Round 2. I wish Lem had been around when I was 36!

Ed

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