My Experience on Lemtrada
I was diagnosed in 2004 with RRMS after being going several years with the diagnosis of Lupus. I was started on Betaseron and for two years of taking this drug, I had deteriorated from walking and talking individual to someone who had ended up in a wheelchair, slurred speech, had lost control of bladder and bowels, a great deal of cognitive disorders, and a lot of pain with muscle spasms. My EDSS score has risen to a 9.7 out of 10. Totally disabled at this point, my physician told me I was primary progressive and that there was nothing strong enough on the market to treat me; he said I had the worst type in the worse possible place.
My lesions were extensive on both sides of my neck and in my thoracic region and my brain was the last place for lesions to form but I had started with a couple of large ones on the base of the brain. My doctor is a MS Specialist and also a researcher and had gone to a seminar over in Great Britain. After his return he called my home and asked me to get into his office as soon as possible that he thought he had a treatment that would work for me. My husband loaded me up and drove the 3 hour drive to his office and both of us was blown away by his excitement over the drug now called Lemtrada. I knew it as Campath or otherwise called Alemtuzumab. He explained it in great detail and explained it had been used over is Great Britain for several years with amazing success. Because there wasn't anything else out there at that time strong enough to treat me, we felt there was nothing to lose so I signed on for the treatments.
The first treatment started in 2006 given IV in his office for 5 hours a day for 3 days. Solumderol and other medications were given prior to the infusion to decrease side effects. You only take it once a year and do not take other MS medications while on this drug. I did this treatment every year for 3 years. The side effects were really manageable but the results were AMAZING for me. After the third dose, I was out of the wheelchair and a lot of my symptoms had reversed themselves. Even my lesions had disappeared on my MRI's. It was my "Miracle Drug". If this was great enough, I continued to do really good for 3 additional years without having one exacerbation, no Solumderol, nothing. I was able to walk up to 4 miles a day without any assisted devices. It was the closest I had felt to normal in many, many years. I even thought I was going to be able to return to work. I went on to year 4 without any other MS treatment, but started showing signs of my old symptoms again. I went through round 4 of Lemtrada this past March and am planning round 5 this coming February 2014.
I keep up with it in the news to see when it will ever be FDA approved for treatment, but I have been fortunate to be in a study for this drug and all I can say it that has been so wonderful for me. My EDSS score dropped down to 4 during those 3 years I went without receiving anything. This is a chemotherapy treatment which is different from the other medications presently approved for treatment. I have been waiting since 2006 for this to be approved so others like me can have a chance to receive the benefits that I have from it; I guess you can say that I'm it's biggest fan. My only fear is that if it doesn't become approved that I will lose the only medication that I have had that has worked to keep my MS from making me a total vegetable. I now write a blog trying to spread the word about MS, it's challenges, and things I have tried to help me manage my MS and be a productive person.
Do you celebrate your MS Anniversary?