Questions have been running through my head. Do I want to try this? What color is it? When do I start? She said it's white! I have read the reports. People have died from it.... It's a risk isn't it? Worried hippy here.
What if's are fluid around me and I am drowning. Tysabri... I am a favorable case...Case. Shit! I am a case! Time to accept another jump into the unknown... I would rather hear the noise of an engine and the feeling of getting ready for a parachute jump. I have heard good reports about Tysabri. I am on the waiting list. Should be about a month. MRI before that. It's the 'not knowing' that I find difficult. I am just going to go for it. PMA after all!
I have taken harder drugs with equal risk for fun. Lets give it a chance.
The thing is... Do you know the waiting time for a MRI on the NHS? Its about 3 years if you don't have a proven thing wrong with you. YOU GET A DIAGNOSIS AND ITS DAYS! What do you need to be diagnosed....an MRI. That's messed up. Anyway I have new things to think about. White stuff. Satan's sputum or nectar of the gods? Hmmm, we will see.
I can understand your concerns. Tysabri scares the shit out of me. PML is not something I ever want to deal with. The thing is you should think about what this means for you.
On one hand, yes there are risks...but there are risks with everything in life. Some people have gotten PML and died, but there are also people who have done very well....even showing major signs of recovery. The drug is new and there is not a lot of info on long-term effects, so that can be scary, but every drug has some side effect.
I suppose it all boils down to how you feel, if the risk is worth the possible recovery. That age old question all of us with this illness has....Quality of life vs. Quantity of life. Seeing how we can go out and get in a car wreck tomorrow. Life is short, there is no certanity...so if this is something that may benefit you and you are comfortable with it than I say go for it and Good Luck!
As always you will be in my thoughts and prayers. I'm here for you always!
The chicken/egg thing with the MRI is just unfair. You need to have some sort of 'man on the inside' to shuffle the papers right. Of cough up the cash to have it done yourself. Not happening.
I've been on Tysabri for 9 months now, and it was a great decision for me. I can't say that for everyone, but hey - I can't stand on my left leg without holding on to something now. Not everyone regains ability, but I haven't had a single exacerbation either. And the risk is really very small. Since they put it back on the market (the PML stuff happened and they pulled it) there hasn't been one case of PML. I think 14,000 people worldwide are on it now.
It doesn't feel like anything to get. You just go have an IV for an hour. Beats the hell out of a shot everyday in my book!
Hi there, from SW Florida. I think I know how you feel about this decision. My neuro is awaiting my decision for a month now. copaxone didn't work (after 2 years) and the interferons were hell. I was supposed to call doc 2 weeks ago and have been procrastinating...just can't jump! Where's my magic 8 ball?
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PMA is the way to go!
I can understand your concerns. Tysabri scares the shit out of me. PML is not something I ever want to deal with. The thing is you should think about what this means for you.
On one hand, yes there are risks...but there are risks with everything in life. Some people have gotten PML and died, but there are also people who have done very well....even showing major signs of recovery. The drug is new and there is not a lot of info on long-term effects, so that can be scary, but every drug has some side effect.
I suppose it all boils down to how you feel, if the risk is worth the possible recovery. That age old question all of us with this illness has....Quality of life vs. Quantity of life. Seeing how we can go out and get in a car wreck tomorrow. Life is short, there is no certanity...so if this is something that may benefit you and you are comfortable with it than I say go for it and Good Luck!
As always you will be in my thoughts and prayers. I'm here for you always!
Jaime
xxx