Quote:
Originally Posted by sheena
When I last saw my neuro he gave me 6 choices of meds. I stated I wanted the best and most aggressive drug. Tysabri was his choice by far and I did the paperwork... I was told there had been 2 deaths, but one was a person with HIV and the other herpes. I'm fine there. However after research, it seems there have been atleast 6 or 7 die, and many others with severe problems after. Is this really true - I read it here and it seems to be backed up. I know all had a suppressed immune system, but mine is not the greatest. I'm COPD which he said was fine, sick a lot, need to go back for more tests on my B12 as it was off. I want the best, but I don't want to end up a veg. I feel like I can take a risk on death but not on getting worse or getting something else. Thanks so much ~Sheena~  |
My suggestion would be to try the one that has the least side effects first (as far as I know, that's Copaxone). Then try the others and work your way up to Tysabri.
There are a few other treatments than the CRABs and Tysabri. I dont know if it's on the market yet or if it's still in trials, but there's something called Estriol that's been said to work fairly well. (it's a type of estrogen) I'm pretty intrigued by that one.
There's also something called Low Dose Naltrexone (LDN) that sounds pretty promising to me too.
I'm planning on asking my neuro about the Estriol and the LDN at the beginning of May when I go back to see him. (unless I see him sooner, seeing as I might be in a tiny flare right now...)
Please, do as much research as you can about the CRABs and the Ty and the other stuff...dont just go off what the neuro says, and dont think that we're trying to talk you out of doing the Tysabri, because I dont think we are...We all just want you to have a bit of knowledge before you pick what treatment you want to try first.
I held off on a treatment when I got diagnosed in January 2007 because I wanted to read about all the different drugs before I chose one. I picked Copaxone mostly because the thought of having the "flu" every week didnt sound so appealing. The C isnt all that great either, since it's a daily injection and for me the shots are itchy, and kind of remind me of bee stings. (not everyone gets that reaction apparently)
I didnt choose the copaxone until after I had my second opinion at the MS Clinic here in town. They wanted me to try Avonex. But, they didnt try to talk me out of Copaxone. They just wanted me to get started on one.
I dont think it matters which CRAB you take first, as long as you get started on one that will hopefully hold back the little MS Trolls and keep you from having flares.