Over the past month or so, I’ve noted several comments, mostly from folks on Tysabri, about hair loss. As a person not yet on this drug therapy (but considering it, intently) I want to know more; and I’m sure our other readers do as well. Novantrone, a chemotherapy drug used on some forms of cancer as well as MS, has a listed side effect of minor hair loss. When on a regular dosing schedule (every 3 months) I found a few more of my ever-graying tresses in the shower drain but not so much to be alarmed. Besides, as I said, some shedding was expected. These anecdotal reports of unexpected follicular abandonment while on an MS drug are of concern to me. Not for the reasons of vanity. While I feel lucky to have a full head of hair in the midst of scads of male pattern baldness on my mother’s side, I’m not much one for vanity. No, rather, it’s the fact that this side effect is only now coming to light and is doing so rather silently. We need to be letting our neurologists know if you are loosing your hair at a more rapid rate after starting this drug therapy. Remember, this therapy was fast-tracked onto the market. It seems to me to be an amazing drug (otherwise, I wouldn’t be considering it myself), please don’t think I’m bashing this treatment. My point is that if hair loss is an unexpected side effect of this, or any MS therapy, what else might be unexpected? We all see and hear drug adverts on the radio and television. Sometimes it seems like the listed side effects take up more of the allotted time than the actual selling pitch. We’re supposed to know about this stuff. The doctors are supposed to know. The drug companies are supposed to know! Let’s get a little survey going here (I know, how very unscientific, but this is what we’ve got). Who among us taking Tysabri has experienced more hair loss than average? Have you told your docs? Are you concerned about it? Any other side effects you weren’t expecting from this or any other MS drug? I’m asking for my own information as well as everyone else’s. Please share. Wishing you and your family the best of health. Cheers, Trevis
