Lemtrada (Alemtuzumab) for Multiple Sclerosis

What is Lemtrada?
Lemtrada (Alemtuzumab) is a humanized monoclonal antibody used to treat people with Relapsing Remitting Multiple Sclerosis (RRMS) who typically have not responded to 2 or more treatments. It is technically a type of chemotherapy as it was originally released as Campath (first FDA approved in 2001) to treat B-cell Chronic Lymphocytic Leukemia (B-CLL) but was used at a much higher dose (Campath). It was later FDA approved for treating Multiple Sclerosis on Nov 14, 2014.

Is Lemtrada Chemo? Click Here to Read!

How Does Lemtrada Work?

First let’s briefly explore the role of the immune system in Multiple Sclerosis and what a Humanized Monoclonal Antibody is/does. Multiple Sclerosis is believed to be an autoimmune disease in which the body’s own immune system attacks itself (the Myelin Sheath in the case of MS).

A Monoclonal Antibody basically targets a specific cell, in this case, B and T cells; Lemtrada reduces the amount of B and T cells (white blood cells also called leukocytes) which (in MS) are believed to be directly involved in attacking the central nervous system (CNS). So the basic idea is that if MS is an angry child with a hammer smashing up your CNS then it won’t be able to do much damage if you take the hammer away. Now it does not destroy all of your B and T cells, it depletes them and over time the B cell count rises so this is by no means a cure. It basically works by lowering the strength of your immune system so it doesn’t have as much power to attack your CNS. That is an extremely over-simplistic explanation.

Now I mentioned that Lemtrada is a chemo agent but it is not the same as the “stereotypical” chemotherapy people typically think of. The best way I have heard it put is if “regular” chemotherapy is a nuclear bomb (killing every cell it comes in contact with) then Lemtrada is a smart bomb because it only targets and kills certain immune cells while leaving everything else untouched. So though it’s not the same as the “stereotypical” chemotherapy people think of, it still does (obviously) cause some immunosuppression. Still, don’t let people try to scare you into thinking it will do to you what it does to cancer patients, it’s not the same thing, it’s a much lower dose then when it’s used to treat cancers.

Dosing and Administration
Lemtrada is given intravenously over 5 consecutive days and then 3 consecutive days 1 year later. Some patients may require longer treatment (meaning more than just 2 years). The dosing for Multiple Sclerosis is 12mg a day where the dosing for Chronic Lymphocytic Leukemia is much higher (up to 30mg a day) and can last about 12 weeks instead of 5 days. So I tend to think of it like a full dose of chemo for cancer is like a full glass of water but Lemtrada for Multiple Sclerosis is like a glass that is only filled about ¼ the way.

When receiving Lemtrada you will be given IV steroids and possibly a couple of other premeds first to help prevent possible side effects like rash/hives and nausea. Between the pre-meds, Lemtrada, and the observation time you will be there about 8 hours a day so be sure to bring stuff to do unless you enjoy staring at the ceiling for hours on end.

Side Effects and Precautions
I will admit, when you first read the safety information they give you it can be kind of intimidating but you have to remember, if just one single person reports something they have to list it. So when it comes to side effects I am really only going to tell you what I have most commonly seen among the many other patients who have had Lemtrada in a Lemtrada support group I am in and what I have experienced myself.

During the infusion, you might start to develop a rash or hives but that is controlled with Benadryl (Diphenhydramine) or a similar antihistamine. You may develop nausea but a common pre-med is something to help nausea. I had a minor rash that lasted a couple months afterwards but it was easily maintained with anti-histamines. I also had pretty bad nausea for a month or two and they did send me home with anti-nausea meds but honestly, they did not really help so I used a cannabis oil and that completely eliminated my nausea. No wonder cannabis is widely used among cancer patients!

After your steroid induced uplift ends (usually after about 2 weeks for most people) you will probably be hit with a heavy fatigue. A lot of people (including myself) describe this as much worse than the regular “MS fatigue”. I am not sure how long this lasts, some say about a year after the first infusion but most say it just depends on the individual, everyone is different right? Something I will later write about is how many people say that the medication they took for fatigue seems to stop working after Lemtrada but there are no official reports on this matter.

After Lemtrada, you need to avoid certain foods, mainly fresh fruits and vegetables (uncooked as they can carry a bacteria called Listeria) and deli meats/undercooked meat. No more rare steak, everything has to be well done, oh and fish? Well, forget about Sushi. You can look up “neutropenic diet” (for people with weekend immune systems) information to get an idea of the do’s and don’t but Lemtrada does not cause need for all the extremes, the neutropenic diet is aimed more at people who have completely wiped out their immune system or have something like HIV. In the handbook Lemtrada gives you they have their own basic guideline you should follow.

A warning worth mentioning; Lemtrada can increase the risk of developing other autoimmune disorders such as ITP (Idiopathic Thrombocytopenic Purpura), cancers and thyroid problems.

Lemtrada also causes you to be more susceptible to viruses in the herpes family such as shingles. You must make sure all your vaccinations are done before your treatment and the Zoster vaccination for shingles is extremely important. A couple of weeks before you start Lemtrada you will probably start an antiviral such as Acyclovir to help protect you against many types of herpes viruses. Every doctor may keep their patients on this medication for different amounts of time but most likely it will be for at least 6 months after but many people may stay on for much longer.

When going on Lemtrada you are required to start monthly labs as side effects can come about months or even years later. You will be instructed to do monthly skin checks on yourself to keep an eye out for anything unusual and once a year your doctor will perform a skin check. All this must be done for 4 years after your last infusion of Lemtrada. MS One to One (Lemtrada’s support service) offers several different options for completing labs to make things easier on you (such as having a nurse come to your home or office to do your labs).

Clinical Evidence
Lemtrada was FDA approved based on the evidence provided by two Phase III studies. The first study (Care-MS I) compared patients on Lemtrada to patients on Rebif who had never received another disease modifying therapy before. Care-MS I found that 78% of patients on Lemtrada were relapse-free after 2 years compared to 59% of patients on Rebif who were relapse free. This study also suggested that only 8% of patients on Lemtrada experienced a worsening of disability as measured by the EDDS (Extended Disability Status Scale) score.

The second study (Care-MS II) compared patients on Lemtrada to patients on Rebif who had used other disease modifying therapies in the past but had still had at least one relapse while on that medication. This study found that the annual relapse rate for patients on Lemtrada was 0.26 compared to patients on Rebif who had an annual relapse rate of 0.52, meaning patients on Lemtrada had 49% less of a chance of relapsing than those on Rebif. After 2 years 65% of patients on Lemtrada were relapse-free compared to 47% on Rebif. Only 13% of patients on Lemtrada experienced a worsening of disability (increased EDDS score) compared to 21% of patients on Rebif.

CLICK HERE to read the FDA prescribing information.

Matt Allen G

I was diagnosed with Multiple Sclerosis (MS) in 2010 at the age of 20. It's been a battle ever since and I have always shared my story and struggles online!

18 thoughts on “Lemtrada (Alemtuzumab) for Multiple Sclerosis

  • March 11, 2016 at 6:19 pm

    Great topic to cover, really informative. All you write about is all really interesting things. As all of us are different with MS in how it affects, the descriptions and the way you use examples to explain things is really awesome. Keep your head up buddy and can’t wait to read more articles. Push through all the crap life throws at you , and be living proof that MS does not decide the person we will be.

  • Pingback: Did I Speak Too Soon or am I Just Being Impatient? | Matt's Multiple Sclerosis

  • Pingback: Making Some Changes to Keep Doing Better | Matt's Multiple Sclerosis

  • April 22, 2016 at 9:36 pm

    Hey Matt,
    I am an Occupational therapist student from Loma Linda University. Currently we have been learning about different types of conditions of the motor unit and came across Multiple Sclerosis as well. I found your blog to very enlightening on how to treat RRMS with Lemtrada. As you mentioned that Lemtrada just got approved for treating MS in 2014 so it is pretty recent. I have learnt that with RRMS, a person may recover either fully, partially, or not recover at all. I was wondering that if this treatment is effective on a person, when does he/she start feeling better? Were you recommended to see an OT? If yes, what all interventions did the OT suggest you?

    • April 22, 2016 at 11:11 pm

      Hi, what you have to understand about disease modifying therapies (treatments) for MS is that they do not make the patient better, they only aim to stop the progression and keep their EDSS score low. So let’s say this works for me, it will only prevent future relapses, it will not undo the damage I already have, make sense? Sucks that they have not developed a medication that promotes remyelination/neurogenesis but I guess they ARE working on them, hopefully they will be FDA approved sooner than later but for now? I can really only heal as much as my body will on it’s own. I have been to occupational therapy in the past but where I am right now really does not require it. I would be taking time away from someone who REALLY does need it, besides, since my mom is an OT I kind of have what I need here for now haha

  • May 2, 2016 at 3:25 am

    Hello Matt,
    I’m another OT student from Loma Linda. That’s so cool that your mom is an OT. She graduated from our program, right?
    Thank you for educating us about this treatment. I hope Lemtrada ends up working for you. It would be great if it would prevent future relapses.

    • May 2, 2016 at 2:42 pm

      Yes, she did, and it’s tricky, they say it gets worse before it gets better and that is so true… I have felt like total crap with a few days here and there since the treatment. Flaring up left and right, so, we will see…

      • September 29, 2016 at 3:00 am

        How are you feeling now? I am starting Lemtrada after I heal from Baclofen pump surgery.

        • September 30, 2016 at 6:35 pm

          Honestly I don’t feel any different but I know Lemtrada is not MEANT to make you feel better but instead keep you from getting worse. I think they said that people typically started seeing benefits (as in no disease activity) around 3-5 years after the second dose.

  • Pingback: Feeling Better But Here Comes the Heat | Matt's Multiple Sclerosis

  • Pingback: Is Lemtrada (Alemtuzumab) Chemotherapy? | Matt's Multiple Sclerosis

  • Pingback: OK, Done Talking About Feeling Like Crap… | Matt's Multiple Sclerosis

  • August 30, 2017 at 9:31 pm

    hi sice my second treatmeny i have been haveing strong sharp stabbing pains in head blurred vission feeling sick and weard can some one tell wot is going on

    • September 2, 2017 at 6:27 pm

      How long has it been since your second infusion? I know a lot of people experience multiple relapses after the first infusion. I did. After the second Fusion I don’t think I really experienced anything that I would consider an actual relapse. But maybe some people experience a relapse after the 2nd as well? I honestly am not sure

  • September 30, 2017 at 9:07 pm

    I see you don’t monetize your blog, don’t waste your traffic, you can earn extra cash
    every month because you’ve got hi quality content. If you
    want to know how to make extra money, search for: Mrdalekjd
    methods for $$$

  • October 23, 2017 at 1:14 am

    I just finished my 5 day journey with Lemtrada very weak foggy headed no energy achy all I want to do is curl up and sleep experience very bad headaches but I’m going forward not backwards hope it works for me!!

    • December 30, 2017 at 4:09 am

      Sherri, I just finished my first year; 5 day Lemtrada Infusion. I completely have been experiencing the same. Faith & positive attitude is def moving forward. Thanks for the post.


Leave a Reply