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PML Cases now at 298!

PostPosted: Fri Oct 19, 2012 7:06 am
by HarryZ
In a recent update, the number of Tysabri related PML cases has risen 13 from last month and now sits at 298. The total number of deaths associated with this are 63.

It appears the monthly increases are becoming larger as patients are on the drug longer.

http://chefarztfrau.de/?page_id=716

Harry

Re: PML Cases now at 298!

PostPosted: Sun Oct 21, 2012 10:34 pm
by civickiller
out of how much people on tysabri ?

Re: PML Cases now at 298!

PostPosted: Mon Oct 22, 2012 5:54 am
by HarryZ
civickiller wrote:out of how much people on tysabri ?


Trying to get an accurate number of MS patients currently on Tysabri is difficult because it varies month to month. I believe the last number I read was about 58,000 world wide. Biogen's initial forecast was hoping for about 10 times that amount. PML has hurt the use of this drug in a huge way.

The concern is the risk of PML as its length of time usage increases. That risk is about 1:500 patients but may be higher now with the larger number of PML cases.

Harry

Re: PML Cases now at 298!

PostPosted: Mon Oct 22, 2012 9:34 am
by Bender
Those numbers are way off there are over 40k (at least that was the number I was given when I was put on it) so the hundreds of people being effected by PML are a minor consideration vs the help it provides thousands.

I had to stop taking tysabri because I developed an alergy to it but it was amazing when I was on it, I actually was myself and had my own fucking brain again, I would give anything to be able to go back on it and it frustrates me when people are alarmist over PML because given the numbers it's not actually worth the people running around with their hair on fire.

As you doctor, look at the numbers and make a decision, but to be scared of a drug that tens of thousands are on because of a couple hundred cases of the side effect that they now watch for (which is why it's rate of killing people has decreased) and that they assess your risk for (by testing for PML exposure before starting tysabri) is just silly.

Every thing you put into your body could potentially kill you.

Re: PML Cases now at 298!

PostPosted: Mon Oct 22, 2012 11:30 am
by HarryZ
Bender wrote:Those numbers are way off there are over 40k (at least that was the number I was given when I was put on it) so the hundreds of people being effected by PML are a minor consideration vs the help it provides thousands.


Are you referring to the number of patients that are currently on Tysabri? Because the number I gave is not too old.

I had to stop taking tysabri because I developed an alergy to it but it was amazing when I was on it, I actually was myself and had my own fucking brain again, I would give anything to be able to go back on it and it frustrates me when people are alarmist over PML because given the numbers it's not actually worth the people running around with their hair on fire.


Not only PML is an issue with Tysabri but like yourself, patients can develop alergies, severe infections etc. That and other reasons are why I believe there are over 20,000 patients who have had to give up on using it.

Yes, there are patients who do very well on the drug, just as there are some patients who do well on a DMD, strict diet, CCSVI, Gilenya, etc etc.

You may not be concerned about PML but I can tell you those who get it are more than concerned. It's life threatening at worst and at the very least, quite disabling. Some patients are willing to take the risk and others simply will not. But please don't try an trivialize the dangers of Tysabri because they are very real.

As you doctor, look at the numbers and make a decision, but to be scared of a drug that tens of thousands are on because of a couple hundred cases of the side effect that they now watch for (which is why it's rate of killing people has decreased) and that they assess your risk for (by testing for PML exposure before starting tysabri) is just silly.


I agree, discuss Tysabri with your doctor and become as well informed as possible before making a decision. But remember, Tysabri is a drug that Biogen told us was very safe at first and you only had a 1:1500 chance of getting PML. Now that risk has risen to at least 1:500 and may even be higher. You can't simply dismiss the danger because you think it is silly. Because you may be JC Virus negative at first doesn't guarantee you won't get PML. And if you are judging the danger simply by saying the rate of people PML kills people is decreasing, then I fear you have a very limited understanding of what PML and other infections can do to MS patients.

Harry