Columns The MS Wire - A Column by Ed Tobias My Lemtrada Journey: A 6–Month Report My Lemtrada Journey: A 6–Month Report by Ed Tobias | June 30, 2017 Share this article: Share article via email Copy article link It’s been a little over six months since I completed Round 1 of my Lemtrada infusions, so it’s time again to ask myself, “How am I doing?” The answer: I’m not sure. For many years, my brain MRI has remained unchanged. I can’t remember the last time I had an exacerbation (something bad enough to require steroid treatments). It was, literally, in the last century. But my walking has slowly, but steadily, declined. (I wrote about this disparity between some MRIs and symptoms in my last column.) So, I’m really not sure how much of an impact any of the disease-modifying drugs that I’ve been on since 1996, including Lemtrada, have had on my MS. I like to think that all of the shots, pills, and infusions that I’ve been treated with over the past two decades have, at least, slowed the progression of my disease, but it’s really hard to know for sure. Enter Lemtrada As you probably know, Lemtrada is designed to halt further progression of MS. In addition, some patients have had some symptoms reversed. But that benefit wasn’t expected, it just sort of appeared during the clinical trials. On the other hand, more than a few patients are reporting a variety of negative symptoms following their infusions. My 6-month timeline The first three months post-infusion were a real roller coaster. The lowest point on the ride was at about two months post-infusion, when I developed a fever, slight headache, and a cough. Naturally, my energy level also dropped. It was diagnosed as strep, and after downing antibiotics for about 10 days, I was much better. Around the five-month point, my wife thought I was walking better. Today, just past six months, I think I am — sometimes, but not always. I also can flex my left foot up from the ankle just a little, and I think that’s new. Cramping in the insoles of my feet, which took place almost every night when I got into bed, has been significantly reduced. So, all positive stuff. But, on the other side of the coin, I developed an aching pain in both hips around mid-February. At times, that pain would shoot down one or both legs when I put weight on them. It’s been worse in the mornings, particularly if I’m trying to get up from squatting down. But, is this drug-related, or is it something else? My neuro says it’s not related to the infusions. Some Lemtrada patients have suggested that it’s the feeling of my body “making new bone marrow.” I just don’t know. This pain has slowly eased since it began four months ago. That improvement may be related to receiving physical therapy treatments in April and May and getting back into the swimming pool in June. That physical therapy and the swimming may also be responsible for the mobility improvements that I mentioned earlier. Or is it the Lemtrada? Or, maybe it’s a combination of both. The six-month mark is the time at which, I’ve been told, the ups and downs tend to level out or to swing upward. That seems to be the case with me. So, I guess it really doesn’t matter whether it’s Lemtrada, or PT, or swimming, or just the natural course of my MS. I’ll continue doing what I’m doing and hope for the best. You’re invited to follow 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 Services, and are intended to spark discussion about issues pertaining to multiple sclerosis. Print This Page About the Author Ed Tobias People say to write what you know and Ed Tobias knows about MS. He's lived with the illness since 1980, when he was 32 years old. Ed's a retired, award-winning broadcast journalist and his column combines his four decades of MS experiences with news and comments about the latest in the MS community. In addition to writing his column, Ed is one of the patient moderators on the MS News Today Facebook, Twitter, and Instagram sites. He’s also the author of “The Multiple Sclerosis Toolbox: Hints and Tips for Living with M.S.” Ed and his wife split their time between the Washington, D.C. suburbs and Florida’s Gulf Coast, trying to follow the sun. Tags Lemtrada (alemtuzumab) Comments Leave a comment Fill in the required fields to post. Your email address will not be published. Your Name Your Email Your Comment Post Comment
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