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Lemtrada and MS


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:]

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.

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Ed Tobias is a retired broadcast journalist. Most of his 40+ year career was spent as a manager with the Associated Press in Washington, DC. Tobias was diagnosed with Multiple Sclerosis in 1980 but he continued to work, full-time, meeting interesting people and traveling to interesting places, until retiring at the end of 2012.
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  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 TobiasEd 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.


    • 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!

  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

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