When we scheduled my first round of Lemtrada we also scheduled my second round because it was supposed to be done one year later so why not knock it out all at once and make sure that I get round 2 right on time, right? Well since my first round my neurologist has moved to a new medical clinic which means I moved as well. Here is the problem; I was no longer on a schedule for round 2. My neurologist had emailed me a while ago instructing me to call the new clinic and get on the schedule. So I called and got no answer. I called again, left a message with the supervisor in charge of the schedule and… no answer. 3 weeks later, after more calls, more message, I still had no answer.
When I was first thinking about using Lemtrada for treating my Multiple Sclerosis this was the first question that came to mind. So many people told me that yes, Lemtrada was chemo. Then a bunch of people started telling me that no, it wasn’t! I could not seem to find a straight answer but I did find that a lot of people were asking this question too! I joined a huge Facebook group for people who had done Lemtrada, were going to do it and people who were just thinking about it. All the moderators (the people who ran the group) insisted that it was not a type of chemo despite all the facts I had gathered while trying to answer my own question. I was told that they did not want anyone to associate Lemtrada with chemo because it “might scare people”. Well, I was not happy with such an answer; I don’t censor the truth to satisfy someone’s agenda… That will only hurt people so I left the group because I felt that spreading the word on what they believed was a disservice to people with Multiple Sclerosis. I feel people should know all the facts when treating themselves with a new medication.
It has been a rough week or so… Maybe 2 weeks ago I was experiencing a sharp pain in the knuckle of my big toe (right foot). It felt like nerve pain but I just could not justify it as Multiple Sclerosis pain as it was in such a small and specific spot! But I had no other explanation as I had not stubbed it, there was no discoloration, bruising, or swelling. It didn’t even hurt when I pressed on it or bent it which tells me it is not an injury! The pain came in random pulses just like the nerve pain I have had in the past! It went away though so I didn’t give it much more thought but last night? It came back with a vengeance! It was so intense but once again in such a specific, small spot. It felt like someone was randomly squeezing my toe with pliers! This morning it is not so bad but the pain is still there. Now it only feels as bad as it did a couple weeks ago… But last night it was causing me to randomly jump as if someone snuck up behind me and poked me with a needle.
What is Lemtrada?
Lemtrada (Alemtuzumab) is a humanized monoclonal antibody used to treat people with Relapsing Remitting Multiple Sclerosis (RRMS) who typically have not responded to 2 or more treatments. It is technically a type of chemotherapy as it was originally released as Campath (first FDA approved in 2001) to treat B-cell Chronic Lymphocytic Leukemia (B-CLL) but was used at a much higher dose (Campath). It was later FDA approved for treating Multiple Sclerosis on Nov 14, 2014.
Is Lemtrada Chemo? Click Here to Read!
How Does Lemtrada Work?
First let’s briefly explore the role of the immune system in Multiple Sclerosis and what a Humanized Monoclonal Antibody is/does. Multiple Sclerosis is believed to be an autoimmune disease in which the body’s own immune system attacks itself (the Myelin Sheath in the case of MS).