- First, is an email I received today from Julie Stachowiak, Ph.D. of ms.about.com.
- Following her email, is my response to what is presently going on with me on my choices.
- After that, it would be nice to receive your responses, for ME and for others who might feel the same as me. PLEASE DO RESPOND if you can.
Subject: About Multiple Sclerosis: Non-Toxic Drugs?
from Julie Stachowiak, Ph.D.
I spent the weekend writing some articles (will come out next week) on Novantrone and Tysabri. I'll start by saying that these drugs can have amazing effects for some people - restoring lost function, slowing disease progression to a crawl, and preventing or slowing further disability. However, both drugs come with "black box" warnings and fairly formidable lists of potential side effects, interactions and contraindications. Even people who swear by these drugs will usually admit to at least a little bit of worry about the risks involved, eventually coming to terms with the statistics.
Wouldn't it be great to have some new drugs in the arsenal that didn't involve each of us doing a risk-benefit calculation before making the decision to take them or not? I'm not saying that we have found the answers yet - we haven't - but I am happy to see that research is being done on some of these more "friendly" approaches. Take care of yourselves, my friends.Stuart's Response: Here I am, in the midst of completing paperwork to get me started on Tysabri and then I have to receive this email of the "BLACK BOX" warnings.Scary as it is already and me questioning my decision. However, I have already been on Avonex, Copaxone and now completing 7 years two months on Rebif.
What other choice do I really have, when my condition seems to be worsening.. Many others also have no choice but to turn to Tysabri.
Sure it would be great to have new drugs on the market without the arsenal that you speak about. But they don't yet exist and it might be 10+ years before we see this.Meantime why scare the daylights out of those needing to turn to Tysabri.I keep telling myself that I want "QOL" ( Quality of Life).. I am still walking right now. Needing a cane most often, but yet still walking and if this means to do Tysabri to keep from a wheelchair, then this might be my only option...
So though, now I have to have an image of a black box, while wanting my "QOL" - .......... MS SUCKS !! Regards, Stuart Schlossman
By using the comments link, please post what YOU would or what you may have already done, or if you just want to also say that MS Sucks, be my guest !!