(This is an updated version of my column that appeared earlier this month on www.multiplesclerosisnewstoday.com)
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 Federal Drug Administration, at a much higher dose, to treat B-cell chronic lymphocytic leukemia. The drug is a humanized monoclonal antibody which seeks out and destroys specific immune cells that carry a protein called CD52. 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 don’t carry the MS-related protein. 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, patients 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 afterwards. A year later that process is repeated, but for only three days. And that’s it. (In a few cases patients have undergone a third round of infusions).
In a study, conducted by researchers at Queen Mary University of London and published in the October, 2016 issue of Neurology, nearly half the patients treated with alemtuzumab (Lemtrada) showed improvements in all 7 functions on the EDSS functional scale two years after treatment began. (EDSS functions include things such as limb movement, numbness, 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. There are stories about similar mobility improvements by patients who have commented on the Facebook page “Lemtrada for MS Treatment.” And, there are also stories there from patients who saw no improvement. It’s worth a look by anyone considering using this drug.
There are Risks
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.
Some patients are also reporting side effects during and after the infusion. These can include fatigue, headaches, hives, a fever nausea and leg pain. Many of these are being reported on the “Lemtrada for MS Treatment” Facebook page
Anyone 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.