Are the Benefits Worth the Risks of Lemtrada?

Are the Benefits Worth the Risks of Lemtrada?

MS_Wire_Ed_Tobias

My neurologist calls Lemtrada “HSCT lite.”  She says that not only is the drug able to reduce exacerbations and limit the overall progression of multiple sclerosis, it’s actually reversed some symptoms in some of her patients.   I guess I’m going to find out if she’s right about Lemtrada because I’m getting ready to start using it.

Lemtrada Targets MS-related Cells

Lemtrada, which carries the generic name alemtuzumab, was originally approved by the U.S. Food and Drug Administration, at a much higher dose and under the brand name Campath, to treat B-cell chronic lymphocytic leukemia. The drug is a humanized monoclonal antibody which seeks out andLemtrada process destroys specific immune cells that carry a protein called CD52. Many of these are believed to be the white blood cells that attack the central nervous system in people with MS.  After those cells are removed, the body manufactures new white blood cells that have different properties, i.e., beneficial helper cells rather than the destructive cells that are programmed to attack myelin. Thus, the similarity to stem cell replacement therapy. That therapy uses chemotherapy to destroy most of the body’s immune system cells. Then, fresh stem cells are infused into the body which, over time, create new white blood cells.

Unlike other disease modifying therapies (DMTs), which require injections every few days or monthly infusions, Lemtrada processpatients receiving Lemtrada are treated once a year, for two years.  The first year the drug is infused daily for five days in a row, on an out-patient basis. Each infusion takes about four hours and the patient is watched for another two hours afterward.  A year later that process is repeated, but for only three days.  And that’s it.

Clinical Trials Show Multiple Benefits

I was attracted to the drug because it’s been shown to improve symptoms as well as halting disease progress. In a study conducted by researchers at Queen Mary University of London, and published in the October 2016 issue of Neurology, nearly half of the patients treated with alemtuzumab (Lemtrada) showed improvements in all seven functions on the EDSS functional scale two years after their treatment began. (EDSS functions include things such as limb movement, numbness, and speech and bladder and bowel functions).  Those results, the researchers write, “suggest that such disabilities may often be reversible (at least partially) in patients with active RRMS if they receive suitable therapy, irrespective of the type of baseline functional deficit.”  My own neurologist tells me that one of her wheelchair-bound patients has regained some walking ability. Naturally, I was interested in exploring it as a therapy.

There Are Risks

But, this treatment is not without serous risks.  They include autoimmune problems that could result in severe bleeding or kidney problems, serious infusion reactions, and an increased chance of getting certain types of cancer. Patients receiving Lemtrada are required to have their blood and urine tested monthly, and they’re monitored very carefully for as long as four years.

Those considering Lemtrada will have to have a discussion with their neurologist, and then determine whether the possible benefits of this treatment outweigh the risks.  For me, the balance falls on the side of the potential benefits. My first series of infusions is scheduled for the first week in December, and I’m sure that I’ll be writing at least one column that week with an IV stuck in my vein. Stay tuned.

[You can read more of my columns on my personal blog: 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.

34 comments

  1. Joan Quilter says:

    I think you are very brave. My daughter was diagnosed in 1997, and is, now, bedridden with severe disabilities. I suppose her MS, now, would be called SPMS, for lack of a better label. Lemtrada sounds great, but the risks are too scary for her. She’s not ready to take the leap.

    • Ed Tobias says:

      Hi Joan,

      Thanks for your comments. I’m not brave, though I am nervous. I was on Tysabri for a couple of years and that drug, also, had the possibility of having some serious side effects to consider. I have a lot of trust in my neurologist, who I’ve been seeing for over 15 years, so that makes these kind of decisions much easier.

      I hope that your daughter will find the right drug for her treatment and that she will do better in the future.

      Ed

    • KATHY FRAZIER says:

      Joan, I too have MS & had it since 1993. I am ready to do this medicine. I now can’t walk with out my walker. I get very tired when I get ready to go out. In a about a another year I won’t be able to do anything for myself. My husband has to do everything from cleaning house, wash clothes to cooking. I’m tired & I’m ready to do something. Yes, I’m afraid but I know if I don’t do something I might regret it later.

  2. Vikki says:

    I wish you luck in this new path. I was Dx in 1993 and have been on most of the dmt’s. I received my first round of Lemtrada in February 2016. I am almost eight months post-Lem and so far, so good! I have no new lesions, and no new MS activity. My biggest advice, hydrate hydrate as much as you can during infusion week, and be as positive as you can!

      • Vikki says:

        If you have any questions prior to infusion or after, please feel free to reach out. There is also a wealth of information in the Lemtrada for MS treatment Facebook group. Members are unbelievable with support, and there are several people who have been in the clinical trials as well. Good luck!
        Vikki

        • Tiffany Maczuga says:

          Hey! I’m about to start on Lemtrada but I’m very nervous. I am 42 and have limited mobility with my left leg. Have you had great results with Lemtrada?

          • Christina says:

            Hi, my husband is going to Chering Cross on Monday to start Lem. I wish you all the best too, Tiffany 🙂

    • Polly says:

      Hi Vikki,
      So nice to hear that Lemtrada has worked for you. I am 10 days away from starting it and am nervous about the side effects and also if it is going to help me with my right leg weakness. I also hear from the blogs that Lemtrada won’t be very successful if you have had the disease for a long time. I was diagnosed in 88 after getting tingling and numbness in my right leg. It gives me hope after reading that you have not had any further lesions. Any advice at this point will be well appreciated as I am starting to get cold feet about going ahead with this treatment.

      • Ed Tobias says:

        Hi Polly,

        Hope you don’t mind my butting in. I’ve written several columns about Lemtrada since I wrote the one to which you’ve responded. My latest appeared just a couple of days ago, following my 9-month anniversary. If you take a look at it, and its links to a few of the others, I think you’ll get a good picture of the pluses and minuses for me…and the pluses outweigh the minuses. As for whether Lemtrada works for someone who was DXed a long time ago, I have you beat. I was DXed in 1980!

        Good luck in your decision.

        Ed (The MS Wire)

        • Polly says:

          Thanks for your response Ed. Where can I read the several columns written by you? I would love to read them to increase my confidence about starting Lemtrada. Would also like to get on the Facebook which I hardly ever go on. How does one get on the ms Lemtrada blog? I am so worried about the weakness and low immunity levels we have to face after the week of infusion. How was it for you? I have a 9 year old special needs child who is on the moderate spectrum so I worry about how I would look after him. Would I be able to get on my feet after a couple of weeks post treatment. Any input would be greatly appreciated.

          • Ed Tobias says:

            Hi Polly,

            Sorry. I intended to include a link to my columns on this web site. Here it is: https://multiplesclerosisnewstoday.com/category/the-ms-wire/. If you’ll scroll through you’ll find the one’s regarding Lemtrada. They begin around the date of my first infusion in December of last year.

            You’ll also find info from Lemtrada patients in this Facebook group: https://www.facebook.com/groups/1723792797845130/. This group is good regarding actual patient experiences but keep two things in mind; not all of these patients know what they’re talking about outside of their own experiences, and groups like this tend to hear more from people who have bad experiences than those for whom things are going along well.

            Like MS, which is different for each of us, so is Lemtrada.

            I tried to do too much, too quickly, not long after my infusion…boosted by the steroid rush. But then it wore off. I drove from MD to FL about a month after the infusion and also caught a bug which resulted in a fever. That left me pretty tired for a couple of weeks around the 5 – 6 week point. I’d suggest that you try to line up someone to help, just in case you get knocked for a loop. You may not need the help but it couldn’t hurt to have someone on standby.

            Ed

  3. Tami says:

    Hi Ed, I am very interested in watching your progress. I also am wanting to try Lemtrada. I was on avonex for 15 years, then recorders for another 4. Had bad side effects from both, so I am now off therapy. My dr. Is still skeptical of Lemtrada so won’t prescribe it. I will be relocating to Oregon soon and will be discuss this option with my new dr. So hopefully soon I will get a chance to give it a try. Best of luck Ed

  4. Tom jenner says:

    Hi folks. I’ve been reading all your posts, the people that are anxious to try lemtrada but are nervous about it. Remind me of myself a yr ago. I’ll be starting round 2 in july, honestly. I went through a period that I wanted to cancel the 2nd round personally I felt no better. My walking has gotten worse and the biggest thing I’ve noticed since starting lemtrada last July 2016 is the Depression I deal with every day. To me the depression has gotten alot worse since starting the lemtrada. Not really sure why. I feel fortunate that I had no real serious side effects. In the round one series But I almost feel like I’m pushing my luck going for round 2. When you sit and read all the things that could go wrong. Yes it’s scary. But I was kind of limited to what m.s. drugs I could try because of testing positive for that JV Virus, something I had never heard of. Have any of you been tested for the virus. Anyone test positive for it. If so. Are you limited to drug therapy let me know. Please. Tom

    • Vikki says:

      Hi Tom,
      I’ve now completed my second round of Lemtrada in March, 2017. I wanted to let you know you are not alone. About three to four months after round one, I started to experience a huge increase in my anxiety levels. I didn’t have very bad infusion reactions outside the expected fatigue and joint pain. After going through more thorough thyroid testing and hormone tests, it was found that I had a chemical imbalance from the five days of steroids and taking an anti anxiety medication for a few months took care of the problem. It’s also a very normal reaction to not want to put your body through round two. Going into round two I had felt good. Not symptom free, I’ve had ms too long to repair past damage, but finally stability. But not doing round two is only completing half of the treatment and for me I didn’t want to negate the last year. As to the JC question I am positive. I had high titre levels from the five years of Gilenya I had done prior to Lemtrada. I was advised to discontinue it and I could not go on Tysabri or Tecfidera. I was offered Rituxin or Lemtrada. I chose Lemtrada because if there is a chance of stopping progression I was willing to accept the risks that come with it. I hope you find some stability as well, and if the depression worsens let your doctor know. Being mentally positive is a big part of all of the newer treatments. I have found that I was mentally prepared for round two because I knew what to look out for from last year! Good luck in your decision!

      • Polly says:

        Hi Vikki
        I would love to know how are doing after finishing your 2nd year on Lemtrada. Hope you are out of the depression phase. I am concerned about the low immunity a person goes through post Lemtrada. How long does that phase last?

        • Vikki says:

          Hi Polly,

          I am a little more then six months post round two now. I will be honest, the second round has been a bit more difficult for me than the first. My immune system was very low going into the second round. I have to say though, it is 12:30 am and I just walked into my house after going to see an amazing rock concert with my twenty year old daughter, and handled the strobe lights and could drive us home! I haven’t been able to do this in years! How I will feel tommorrow? I don’t know but I am just trying to wrap my head around the fact that I did more today than I have been able to do in the past five years at least. For this I will be eternally grateful. My brain, cervical, and thoracic spine all showed many lesions, but no new or enhancing lesions. At 25 years, I cannot ask for better than that! My absolute lymphocytes are a little over 500 which is still low, but all other numbers are back in the normal range. I truly wish you the best in your journey…if you have any specific questions please ask away!

          • Polly says:

            Hi Vicky
            Thanks for replying back. I wanted to ask you how long were you first diagnosed and what area of your body was affected by MS and how do you feel now? You mentioned about having more energy which is great. Any do’s and don’t before starting the treatment?

          • Vikki says:

            Hi Polly,
            My first symptom of rrms was when I was 17. I went numb on the left side of my body. It lasted about a week and went away on its own. The Neuro at that time never mentioned MS. Then when I was 23 I had optic neuritis. New Neuro (who I still use today as my regular Neuro, not my specialist who prescribed Lemtrada). I was Dx in 1993 so there were no medications for MS at that time. I have been on Betaseron, Copaxone, Avonex, Rebif, and Gilenya before Lemtrada. I have had so many relapses I can’t even count in the 25 years I have had MS, and pretty much every area of my body has been touched. My goal with Lemtrada was solely to stop progression. Lemtrada does not reverse past damage, although many people have experienced reversal of symptoms. I don’t know how long you have had MS but the earlier you are in the disease process, the better chance of success. There are many does and donts with Lemtrada. My biggest advice to you is do your research, this is not a treatment you can reverse or stop taking because of side effects. If you can, consult with more than one specialist who has experience with Lemtrada. I researched for a year before committing. I wish you luck with your decision! Sorry for the long response!

    • Polly says:

      Hi Tom,I am very sorry to hear that Lemtrada didn’t work for you and you didn’t want to continue with the second year of infusion. I am nervous about starting this treatment in 10 days. My neurologist wanted me be on Lemtrada as I was on Tysabri for a year before getting a positive for JCV. I am furious to know how you are doing now.

    • James Mitchell says:

      Hi Tom. I thought I was the only one with increased depression. Like it was just life?? I would like to hear how you are doing,and what you have done to help the situation. I know depression is an MS gig,I just feel a correlation with the infusion. Thank you and God bless.

  5. Paul Koch says:

    I’m 60 years old and was dx’d ’06. I was on the 99th Tysabri infusion with no benefit other than slowed progression, as far as I tell. I didn’t think of it as bravery, but I had the Lemtrada infusion program done the week of May 16th of this year. I hadn’t had so much as a sniffle for twelve years, but all that changed on May 28th. I was warned that there would be a possible ‘crash’ within a week or so of the completion of the Lemtrada infusion. On the 28th I attempted to use my walker to go to the bathroom, but I was so weak, I could only make one step before falling down. I was unable to get without assistance and it was very difficult to breathe. I was transported by ambulance to the hospital. I was initially diagnosed with pneumonia, but after a few hours I had C-Diff virus, NORO virus, and a UTI. I was in the hospital for nine days; on June 5th transferred to a Rehabilition hospital. I under went physical therapy twice a day, six days a week. When I arrived, I couldn’t even stand up, but after about ten days of grueling therapy, I could use the walker again, although I can’t travel the distance with it that I could prior to Lemtrada. After three and half months, I was released form rehab on October 12th. I’m going to outpatient rehab a few days a week and do all kinds of exercises at home daily, but it’s a struggle everyday. A struggle that I didn’t have prior to Lemtrada. I’ve already decided not to do the second dose in April 2018. This is my experience with Lemtrada. Who knows? Your could be great!

    • Ed Tobias says:

      Hi Paul,

      I’m very sorry to hear about your poor experience after being treated with Lemtrada.

      I’m happy to say that I’ve been doing well as I approach 11 months post round-1. I’ve written about this in several columns that are more recent than this one.

      I wish you the best and hope that you’re able to beat whatever knocked you down so hard.

      Ed

  6. Rislen says:

    ….. thank you for sharing your experiences..
    I was diagnosed in 2000
    Started with Rebif and had horrible side effects. After that I started with IVIG. This drug is not usually used for MS.
    I’m no about 12 years on IVIG. I don’t have major problems….. but my neuro wants me to start with Lemtrada, since my brain shows big lesions….
    My immun System is quit strong ….. and I’m never sick…. no flu no fever or other classical common diseases….’
    And that’s why I’m more than afraid to start with Lemtrada..
    42 years eating healthy, and building a great immune system…, to now kill it with Lemtrada….
    I’m so insecure 😟

    • Ed Tobias says:

      Hi Rislen,

      Thanks for your comments. I understand your concerns and I hope that I can point you toward some information that will help you understand the Lemtrada process. First, however, you need to know that Lemtrada doesn’t kill your immune system. The treatment targets certain B and T cells, the ones that are thought to be the “rogue” cells that cause your MS. It leaves other immune system cells alone. So, your immune system is compromised for a period of time, but it’s not totally destroyed. With good hygiene and some diet restrictions most people seem to be able to avoid catching a bug. Eventually, of course, the cells that are killed should come back, hopefully without the bad characteristics of the original cells.

      I’ve written columns for this web site at 3, 6 and 9 months post-infusion. (I’m now coming up on 11 months). If you use the search function on the site you should be able to find them. You can also search to find news items about Lemtrada that are more technical in nature.

      There’s also an excellent, patient run, Lemtrada group on Facebook: https://www.facebook.com/groups/1723792797845130/. Be sure to read the drug information that’s pinned to the top of the page. Also, browse through the information files that you can access by clicking “files” in the (light blue) left hand column of that page.

      I hope this will help make you feel a little more secure. Best of luck.

      Ed

        • Ed Tobias says:

          Rislen,

          On the FB page there are more than 7,000 MS patients who will watch your back and hold your hand. You’re not going into this thing alone.

          BTW, I still have my own nervous times. We all do.

          Ed

  7. Elaine Nattress says:

    Hello
    I have had both rounds of Lemtrada, the second being February 2017. The first year was rough in terms of flare ups of existing symptoms for me but since round 2 I have been generally really well, in fact there are days when I can’t remember ever feeling so well. I have had no new symptoms which is what Lemtrada is meant to do.
    Just before round 2 my thyroid was underactive for a month or so and then it became overactive. I now have Graves’ disease which is one of the potential side effect of Lemtrada and am under the care of an endocrinologist for that. Despite this I have no regrets so far for choosing Lemtrada.

  8. Mike Dee says:

    I’m on Lemtrada for 7 years.
    It’s excellent and not a bad word to say about it.
    Have no fears people; everything comes with potential side effects.
    I have had no side effects.

    • Ed Tobias says:

      Thanks for the comment, Mike.

      I’m now just past 11 months post-Round 1 and all is going well for me. I’ve posted several columns about my journey since I wrote this one.

      Ed

  9. CC says:

    I’m considering lemtrada since it doesn’t seem like zinbryta is working for me. Should I try tysabri first? I’ve been on copaxone, rebif, rebif with pulse steroids, tecfidera.

    • Ed Tobias says:

      Hi Christi,

      That’s really something for you to ask your neurologist. I can only tell you my experience.I was on Tysabri for several years and it worked very well for me. I moved to another drug whenmy titer score increased to the point where PML was more of a danger.

      There are Facebook groups for both drugs where you can read posts from patients who are using those therapies. That may give you a better background when you speak with your doc.

      Good luck,

      Ed

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