scared newbie

A board to discuss the newly-released drug Tysabri, (formerly known as Antegren) as a treatment for Multiple Sclerosis
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harveythewonderhorse
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scared newbie

Post by harveythewonderhorse » 10 years ago

Hi all, have been lurking here for a good bit, am due to start tysabri next week and have been reading stuff that has given me the heebie-jeebies re PML etc.. anyone talk me round??

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dreddk
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Post by dreddk » 10 years ago

Hi Harvey,

If it makes you feel any better my wife is having her 5th transfusion as I type and has been feeling great since she started (more energized, no new symptoms). No-one in the program here in NZ has had any problems that we are aware of and some have been on Tysabri since the initial drug trial (excepting the period when it was taken off the market).

So 4 new cases of PML with about 35.000 people on it is a risk but for my wife and I its been a risk worth taking. Anyway apparently the risk of your being wiped out with nearly everybody else on Earth) next year by a catastrophic comet, meteor, or asteroid impact: 1 in 20,000

:)

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harveythewonderhorse
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Post by harveythewonderhorse » 10 years ago

thanks for that, Dreddk,it just seems to be suddenly creeping up, had it in my head it was "ages"away.
horse of a horse!
Diagnosed 2001, r/r.

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HarryZ
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Re: scared newbie

Post by HarryZ » 10 years ago

harveythewonderhorse wrote:Hi all, have been lurking here for a good bit, am due to start tysabri next week and have been reading stuff that has given me the heebie-jeebies re PML etc.. anyone talk me round??
The whole idea of websites like this is to share ideas, opinions and ideas when it comes to MS. This particular website has several excellent contributors and is most cases you will find that different opinions doesn't bring bad feelings along with it.

When it comes to Tysabri, I encourage you to read as much as possible about it, become informed and make your decision accordingly. I think one of the biggest problems with the drug to date is that the long term effectiveness and risks simply aren't known at this time.

Whatever your long term choices are, I wish you the best.

Harry

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harveythewonderhorse
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Re: scared newbie

Post by harveythewonderhorse » 10 years ago

HarryZ wrote:it.
I think one of the biggest problems with the drug to date is that the long term effectiveness and risks simply aren't known at this time.


Harry
that's my biggest fear to be honest, I have a lot of trust in my neurologist and both she and I feel this is the best option open to me currently..but...
horse of a horse!
Diagnosed 2001, r/r.

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dreddk
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Post by dreddk » 10 years ago

I think Harvey's comment probably addresses the biggest issue - what will happen after 4, 5 years etc on the drug is really unknown and possibly holds greater risks. Our perspective has been that if it can buy us some time for the next couple of years then hopefully a safer alternative may come along.

Having said that drugs like FTY720 which I personally believe to offer the greatest hope will have similar unknowns...

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