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.

10 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

  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!

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