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anyone on TYSABRI for over 24 weeks? need some advice

i was advised to post this on here as i had only posted it on the young people forum:

im 23, been on tysabri for almost a year and a half now, so in jan 2013 i will be at my 2 year mark which will be when i see my neurologist again. when i saw him last week i was under the impression that he thinks i should come off tysabri and try something else as the risk of the PML goes up some what when you have been on it 2 years, with being young aswell i can understand why i would obviously not want to risk my life, but not quite sure what to do. i had been on copaxone for a year before tysabri and was pretty much a vegetable on copaxone... so tysabri makes my symptoms a hell of alot better, still suffer with things but nothing like before. i wont know what other treatment to try and if it doesnt work i will probebly be in such a state with relapses which will cause conflict with my new job i started last week aswell :S i was aware that tysabri wasnt a long term thing but anything was good at the time when i was relapsing quite horiffically every 2 months with constant symptoms inbetween.

would love some help if anyone has been on tysabri over the 2 year mark and what you decided etc

 

Hello

Im nearly at year 3... anniversary will be coming soon.

I am not that worried about the PML... yes I have the JC Virus in my body (everyone does) and my MS Nurse informed me that the chanes of smoking and getting something nasty from fags is still higher that my risk of getting some nasty reaction from Tysabri.

I can only go by what my MS Nurse suggests.

Life too short to worry about it.

 

aye, il deffo be anticipating seeing my ms nurse in october to see what she thinks. are you much better on tysabri too?

Over 4 years for me. I think whether you are JCV + or - is what would make the difference. I am fortunate to be negative so my chances of getting PML are next to none.

Liz

If I suspected that someone was trying to take my Tysabri off me, I'd be worried too.  Have you been tested to find out what your JC virus status is?  If you are negative, your risk of PML is very small indeed, as Liz says.   In my area, people are getting tested at the moment; we have all been told that the result, whether positive or negative, will not change the treatment recommendation.  I take that to mean that if our MS is so bad that we need something as strong as Tysabri, then that brute fact remains, and the benefits are likely to outweigh the risks, regardless of JC status.  (I don't know mine, by the way, but I soon will.)

Perhaps a chat with your MS nurse, just to clarify what the policy is in your area?

Alison

x  

Hi,

I was having severe relapses and since being on Tysabri I have had mild relapses.

I have been on tysabri for 6 years and been JC positive (the precursor for PML) for a few years. My consultant thinks, as nobody knows, that the risk of developing PML is reduced the longer you are on it.

I also think life is too short and as the MSRC wrist bands states "live is for living"

 

Take care

 

amy x

 

im jc virus negative, that was done about 6 months ago, so i cud well be positive now for all i know lol but ye im starting to sway to wanting to stay on it abit longer if im honest..... because i dont think i cud deal with life if i had to go back to how i was on copaxone. i didnt have a life. i was a vegetable suffering and cudnt see my friends or do much with my boyfriend and with being 20-23 at the time it really sucked to be honest. alot. so maybe i should stay on it until i decide to have kids which i would expect maybe in 2-4 years.... i duno, my neurologist is very hard to understand. hes like a scientist wizard man who talks in context that i dont understand tbh... so my mums coming with me to my apointment in jan coz atleast she gets wot hes sayin lol