Columns The MS Wire - A Column by Ed Tobias My Lemtrada Infusion: Five Days Done My Lemtrada Infusion: Five Days Done by Ed Tobias | December 13, 2016 Share this article: Share article via email Copy article link I’ll admit I was nervous as I sat in the infusion chair for Day 1 of Round 1 of my Lemtrada (alemtuzumab) infusions. I’d read a lot, and talked with my neurologist a lot, about the drug. I knew the benefits of Lemtrada could be great. My multiple sclerosis progression could be stopped dead in its tracks. Some MS patients even had some of their symptoms improved. But there also were risks. The drug would weaken my immune system in order to rebuild it. Lesser symptoms might appear, including chills, fever, hives, rash, scratchy throat, body aches, nausea and significant fatigue. I’ve mentioned the more serious side effects in earlier columns. You also can read about them on the Lemtrada website. So, I was nervous. But, convinced that my potential gains outweighed my possible risks, I told Carrie, my infusion nurse at the MS Center of Greater Washington, D.C., to bring it on: https://multiplesclerosisnewstoday.com/wp-content/uploads/2016/12/Lemtrada_Carrie.mp4 In it went to the IV bag for a four-hour infusion. (The actual Lemtrada infusion was preceded by an hour’s drip of the steroid Solu-Medrol to calm my immune system. And Benedryl by IV). Now the drugs are pumping and so is water — lots and lots of water. I forced myself to chug a 17-ounce bottle most hours, gulping five bottles that first day. At midday things were proceeding well: https://multiplesclerosisnewstoday.com/wp-content/uploads/2016/12/Lemtrada_Day1.mp4 My vital signs were taken each hour. During the course of the day my temperature rose slightly and I felt some pressure in my head, but no actual headache. The head pressure eased when a little Toradol was added to my IV during the final hour and my temp came down quickly. I had a blanket standing by, because many patients have reported chills, but I never needed it. Days 2 – 5 Day 2 was the same routine. Lots of water intake and output, a little rise in body temp, but no head pressure or pain. My blood pressure rose a bit. Rather than feeling chilly, I felt warm. The final three days my BP continued to be above my normal range, but not high enough to cause any concern. I was told that’s a result of the steroids. No longer was I warm. Rather, I felt comfortable and, sometimes, cool. At the end of my five days I felt good. The steroids had kept my energy high and the meds that I’d been taking since two days before the infusions began had held the uncomfortable side effects at bay. I even felt good enough to drive my wife and myself home, a three-hour trip. Post-infusion After my last infusion of the week I was told to go slow. The “Things to Remember” sheet I was given by the MS Center of Greater Washington warned: “Take it easy. Your body is starting the first leg of your journey. You are going to feel achy, weak, you may experience symptoms you haven’t experienced in years. You may have no energy at all.” Yep. I felt pretty good yesterday, my first post-infusion day. A little tired, but I expected that. But, as I write this on Day 7 of my journey, I’m beginning to gain a better sense of what this trip might be like. I woke up feeling a little “spacey.” As the day went on my walking began to slow. My legs dragged more than usual. The feeling is similar to what I remember exacerbation used to be like, and I haven’t had one of those in many, many years. The folks at the MS Center told told me that the first week or two post-infusion can be difficult. But they also tell me that I’ll get stronger, slowly and steadily, as each month goes by and my immune system re-builds. I’ll keep you all posted. (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 Tony McD Thanks for the update, Ed! I'm glad you had a good week! That's week 1 under your belt! You don't have to do anything for a full year other than do your best to help your body recover. That's got to be an amazing feeling. Reply Ed Tobias Thanks, Tony. It's been very smooth sailing for me so far (knock wood). I'm actually feeling very good. Reply Sherri Just finished my first 5 day of Lemtrada made it thru this did pre meds drinking 96 oz water everyday after steroids you’ll hit a brick wall no energy very weak achy bad head ache I hurt all over all I want to do is curl up and sleep hope it gets better!!! Reply Ed Tobias Hi Sherri, Thanks for your comments. I'm now 10 months past round one and things are going very well for me. If you look at more of my columns (The MS Wire) on this web site you'll see what I wrote when I was at 3, 6 and 9 months. Lemtrada can be a roller coaster ride but I think it's worth it. Best of luck to you, Ed Reply Larry Rosenzweig Congratulations Ed. Here's to a pain-free, healthy recovery. What type of MS do you have? Reply Ed Tobias Thanks, Larry. I was diagnosed with RRMS in 1980. Over the last 20 years I've been in a very slow decline, particularly over the past 5 or so. The tests don't show it but my mobility does. Hope your holidays are good ones. Ed Reply Tom Thumb Ed, I had Round 1 last week as well, so we are at the same stage of recovery. Today was my first day of feeling decent, although I did receive a couple flashbacks to my one and only past flareup earlier today(weird sensations on my inner right knee and running down my leg). Good luck with everything, and hopefully this drug keeps MS from any further progression. Best, Tom Reply Ed Tobias Thanks for your note, Tom. I've been very luck to have felt so well all through this treatment. Let's hope it works well for us and for everyone else who is using it. Happy holidays, Ed Reply Brian Blizard Congratulation on having a favorable reaction to your new treatment. Your Nurse, Carrie , is my daughter so I know that you are having great profession care. Continued success with future treatments with the upcoming New Year. Reply Ed Tobias Thanks, Brian. I agree, Carrie is the best. All of her colleagues, too. Reply Mary Holmstrand Can I ask what DMDs you were on prior to getting Lemtrada and how long? Does getting Lemtrada require a drug "failure", if so what does a drug failure look like? And if so, why is a drug failure a pre-requisite? Seems if it works, why not offer as a first line treatment as though treating first line treatement modalities of patients with cancer. Providers treat cancer patients with best possible solutions at cure.....they dont wait till a tumor gets larger or wait for a patient to decline. Just curious..thanks!!!! Reply Tony McD Mary: Ed asked me to re-post my comment from earlier. I guess the server ate my post I cannot remember everything I said but I'll do my best since you bring up a lot of good points. I am not a patient but I'm the spouse and advocate for one. The definition of "failure" of a particular treatment sometimes depends on the the medication or your clinician. For example, your doctor may see something on MRI or in your clinical visit that lets him know that something in the treatment failed. Other times, the definition of "failure" depends on your insurance company. Most of the insurance companies have specific definitions in their policy as to what constitutes a failure. As to first-line treatments, this is largely driven by how the FDA approved the treatment. For Lemtrada, there were instances of ITP and auto-immunity of the thyroid reported in the clinical trial. The FDA in the USA took this to mean it was too "dangerous" to use as a first-line treatment and require that you try other "safer" but "less effective" treatment options first. The insurance companies follow the FDA guidelines and only approve coverage when the treatment is used in alignment with the FDA's approval. There are other places in the world where Lemtrada can be used as first-line (the UK) or second-line (Canada). Some doctors that I respect are hopeful that this will change in the USA some time in the future but that's probably a few years away (at the soonest). You're right that cancer patients get what they need when they need it. The only thing I can think of is that the American Cancer Society has a better PR firm than the MS Society. Think about it --everywhere you look you're seeing cancer in the public discourse. The public are aware of it. MS is much less in the public discourse because the prevalence is seen as much lower. The prevalence numbers you see (400k in the USA and 2.5M worldwide) are very OLD numbers (from circa 1990). Those numbers are likely WAY low in the current era but in the USA we don't track MS patients incidence as a common practice. A recently signed "21st Century Healthcare" bill includes funding to update the MS patient census so hopefully we can get better numbers soon. This is important in the USA because research funding is directly tied to the incidence of disease. Maybe if MS is shown to be more common (no matter how unfortunate that would actually be) it will get the funding for research that it deserves. Further, maybe if it was more in the common discourse the insurance companies (and the FDA) could be persuaded to give patients earlier access to effective treatments. Reply Deborah D Harris You said a mouthfull, in my state everything is all about diabetes. Very seldom is MS spoken of. Reply Marilyn Hi Ed: Good luck with your new journey on Lemtrada, I have been through the exact medications and order you have. I was diagnosed in 79, I've done good but like you mentioned my mobility is not the same but MRI's done show it. my left leg has felt it most. I look forward to your next comments. I have also spoken to my doctor about it but it's still a little scary for me. I am glad that you are leaving comments, it gives me a better perspective. Wishing the best and a great outcome. Happy Holidays! Reply Helen You are giving us all encouragement ! Good Luck! Reply Mary Holmstrand Thanks Ed and Toni McD for the valuable insight. I do still disagree however. Isn't chemo and radiation "dangerous"? But they are, along with surgical intervention when possible, the first line of treatment for cancer. Would a breast cancer patient be told "we need to try this safer but less effective treatment option first"? Are there not instances of reported serious side effects with chemo agents and radiation, but that does not preclude them as first line treatment for cancer. Or even HSCT. Primary treatment for blood cancers is HSCT. No one tells those patients to wait. It has been a proven therapy for 25 years. I find this practice of "lets wait and see" or "your not sick enough/disabled enough yet" mentality in the neuro community when it comes to MS or other treatable autoimmune diseases to be rather criminal and more important negligent. Ashamed that "PR" for a condition is drivng the conversation and/or the funding. Criminal!! Reply Mary Lou I have MS and i am starting Lemartra next week.Thank you all for putting up your posts.Hopefully this drug will slow MS down Reply Ed Tobias Hi Mary Lou, Good luck with your Lemtrada treatments. This post was written over two years ago. I'm now ten months past Round 2 and, I'm pleased to say, I'm doing very well. I've written several columns about my Lemtrada journey since then that might interest you. You can find them if you search for "The MS Wire." Ed Reply Shoshana Riley Hi, How do I follow your posts? I am 1 week out from my round 1. I feel great today. Actually better than I have felt in years. I went to Dr. Crayton as well. I kn ou w I could feel fatigue soon, but want to follow someone's actual experiences. Reply Ed Tobias Hi Shoshana, I'm glad you're feeling well but I suspect you're still feeling the effects of the steroids. When they wear off you'll probably going to face a roller coaster of energy levels and bounce around between feeling well and feeling rotten for a number of months. I'm now about 15 months post Round 2 and feeling well. I've written a lot about this journey and you can find all of my columns here: http://multiplesclerosisnewstoday.com/category/the-ms-wire/. You can either scroll through everything or you can search for "Lemtrada" and just see what I've written about that DMT. Good luck with your treatment. I've been Dr. C's patient since before she went into private practice and was still at Georgetown Hospital. I think she's the best. Ed Reply 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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