I just turned 68. I wrote you before telling you someone told me that at a certain age, I would no longer have to take a drug for my MS. You told me you could not recommend that since no study had been done on people my age. So I went back to my neuro who is originally from Cleveland Clinic because the Aubagio gave me very high blood pressure. I had an aneurysm last July and was in hospital for 2 months, so was very frightened of high blood pressure.
I have been on Rebif, Gilenya, and Copaxone. Copaxone is the only one that didn't give me any side effects except for lump and redness at injection site. Now my neuro wants me to consider Lemtrada. I have read about that and it scares me to death. The cancer part really frightens me. I'm thinking of taking nothing but I am just in a turmoil trying to decide what I should do. Some people don't take anything. Would it really be wrong of me to not take something for my MS?
I'm going to have an MRI done and thought, if that hasn't changed, why take anything? I'm not expecting you to tell me what to do. That wouldn't be fair, but I would love a good honest opinion. Since I stopped Aubagio, I mainly have only noticed my balance has gotten a little worse. I have been off of it for almost 2 months now. I also read that it has to be removed from your body. How do they do that? Is it with steroids? That's what they gave me but didn't explain why. Thank you so much for listening to me. I'm just desperate to make a decision and hopefully the right one.
It is difficult to advise you given my lack of information about your disease course. I can tell you that Alisdair Coles wrote a paper in 2006 called, “The window of therapeutic opportunity in MS; evidence from monoclonal antibody therapy”. In the paper he showed how Lemtrada (called Campath at the time) worked miraculously in early relapsing MS, especially early in the course, but did not prevent disease progression at all in secondary progressive MS. Most people who are 68 years old with MS have secondary progressive type. You need to have a heart to heart talk with your neurologist and have him or her explain why they think you have active relapsing MS. If he or she is able to provide you with convincing evidence that you have active relapsing MS, then Alemtuzumab (Lemtrada) may be an option for you. Hope this helps.
Revere (Rip) Kinkel MD
Director of the Multiple Sclerosis Program
Professor of Clinical Neurosciences
University of California San Diego