My Lemtrada Treatment, 5 Years Later

Ed Tobias avatar

by Ed Tobias |

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It was five years ago, Dec. 5, 2016, that I scootered into the office of Dr. Heidi Crayton, my neurologist, and plopped into a soft, brown leather recliner. Day 1 of Round 1 of my Lemtrada (alemtuzumab) infusions was about to begin.

I’d prepped for this day: two days of Acyclovir tablets to reduce the chance of contracting the herpes virus, and the allergy drugs Zantac and Zyrtec to limit hives and rashes. I also had ibuprofen, Benadryl, and hydrocortisone cream on hand to treat any pain, rash, hives, or fever, if any of those occurred.

But you can’t really be prepared for the Lemtrada experience. I was going to subject myself to about eight hours of intravenous (IV) treatments for each of the next five days. This, using a medication that carried risks as well as potential benefits. The benefits would be slowing, or even stopping, the progression of my multiple sclerosis (MS), which I’ve lived with since 1980, and some of my symptoms might improve. For me, the benefits outweighed the risks.

Needle into the arm

Into a vein in my left arm, right above my wristwatch, went a 24-gauge needle, 5/8 of an inch long. Then, more prep: a 1,000-mg IV bag of the steroid Solu Medrol (methylprednisolone sodium succinate) to calm my hyperactive MS immune system and serve as another barrier against hives, rashes, and the like. Next, an injection of Benadryl into the IV line. Finally, Lemtrada — 12 mg over the next four hours. Finally, there was a two-hour watch-and-see period.

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After four more days of infusions, I was done — for a year. The Lemtrada protocol calls for three more days of treatments 12 months after the first round.

What was it like?

Both rounds of infusions went smoothly. I had a minor temperature rise for two days during Round 1. During Round 2, my blood pressure dropped after I had left the infusion room to use the bathroom, but it quickly returned to normal after I was helped back to my recliner and lay relatively flat for a few minutes. Neither incident caused the health staff to stop the treatments.

I’d been told to expect a roller coaster ride of symptoms — headache, body aches, fever, and fatigue — off and on for several weeks after the infusions, and they were right. Some days I felt like I’d crashed and burned, and on others I felt fine. Two months after Round 1, I had trouble getting out of bed in the morning — or I felt good when I woke up, but took a nosedive in mid-afternoon and had to head back to bed for a nap. Many nights involved getting up for multiple “pee trips,” and there were two episodes of fever and chills. I had similar severe fatigue problems at about six months, post-Round 2.

On the other hand, six months after my first round of treatments, I was able to flex my left foot up from the ankle just a little and that was new. Nighttime foot cramping was reduced. My brain MRI showed no new, active, or growing lesions (though that has been the case for several years). A year later, my wife and I both thought I was walking a little better and standing straighter. My mind felt sharper. My concentration was better.

It’s a marathon, not a sprint

Now, half a decade since Day 1, Round 1, I think I’m generally in better shape. My walking is not as good as it was a year ago, but I think that’s due, in large part, to the fact that the COVID-19 pandemic has kept me from exercising. On the other hand, my bladder function is definitely better, but is that due to the Lemtrada or to a new bladder medication I’m using? My bowels are more regular than they’ve been in years for about the past six months. My fatigue is no worse than it was five years ago, even though I’ve stopped taking anti-fatigue medication. Foot and calf cramping still occur in bed, but it’s less than it was.

At the start of my Lemtrada treatment, my neurologist told me it would be a marathon, not a sprint. She was right, and if I’d viewed it as a short race to the finish line I would have given up long ago. I’m glad I didn’t.

The end

Lemtrada is over for me. Though some patients continue to a third round, I don’t see that in my future. I don’t believe, as some neurologists do, in an age cap for disease-modifying treatments, but I think I’ve reached my benefits cap. At age 73 I think enough is enough. I’ll take my winnings and call it a day.

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

Kathleen Fulghum avatar

Kathleen Fulghum

Best wishes, Ed, on your decision to end DMT treatments. I've done the same. 76 years old; had four years of Cytoxan, 14 years of BetaSeron (with hideous scarring to prove it.) Lots of methylprednisolone, (Doctors refusing cortisone shots for very painful arthritis because of this.)

Still on Ampyra, which seems to help with fatigue. I give Ampyra credit for getting me through broken hip physical therapy. (Pool therapy set up by my fabulous neurologist, Alison Daigle.) Walking in the pool is a joy with no gravity!

Thank you so much for your excellent blog. It's meant a great deal to me.

Reply
Jan Greenberg avatar

Jan Greenberg

I was dx in ‘83 and had no DMD (at all) until a few years ago when Ocrevus left the gate. Since I couldn’t remember the last time I felt “good,” I begged my Neuro to try something. I knew by then that I couldn’t expect to be fixed, but I was willing to roll the dice. Since there was no change noted, I asked if we needed to try one of the new generation DMD. Neuro pointed out to me that I’ve had no new lesions and that we should stick with it. I’m now 69 and should probably think of O as the last stand. From one MS OG to another, I love reading your posts.
Thank you!

Reply
Ed Tobias avatar

Ed Tobias

Hi Jan,

Thanks for sharing your comments and I'm glad you like reading what I write. I hope some of it has been useful. Best of luck with the Big O and Greenberg's last stand.

Ed

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