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-   -   Tysabri Information and Check In part 2 (https://www.neurotalk.org/multiple-sclerosis/84538-tysabri-information-check-2-a.html)

Riverwild 11-13-2009 06:09 PM

Quote:

Originally Posted by Grammie 2 3 (Post 589257)
I read an outstanding article from the Rocky Mountain MS Center by Dr. Timothy Vollmer on pml/Tysabri. I am trying to figure out how to get you there-I am not terribly computer literate :o
I think you can go to www.mscenter.org and then on the left click on eMS news and then register it will come up. I get this in my e-mail. I have an e-mail address that of bblanning@mscenter.org that may be another avenue.
I hope you can find it, it is worth the read!!!
Linda


Hope this helps, Linda! :)

Click at the top of your browser where the address of the page you want to link to is, so that it highlights.

Right click on it and choose copy from the menu.

Go to where you want to paste the link and click where you want to put it.

Right click again and choose paste.

You should see the link appear where you want it to be.

Try this link: http://app2.e2ma.net/campaign/31451....47d0a6ea6#News

That's where I found the article. Thanks for the heads up Linda!

Riverwild 11-13-2009 08:05 PM

Picked up a few things tonight while cruising the MS scene...as usual...:D

First off: PML chart updated at chefartzfrau
http://chefarztfrau.de/?page_id=716

A breakdown of 24 PML cases that I found on an investor board. Sadly, it appears France has joined the party.
8 from Germany,
8 from US
2 from Sweden,
2 from France,
2 from Switzerland,
1 from Spain,
1 from Czech repulblic.

Sex: 9 Males, 15 Females.
Average length of therapy: 25 Months - 18 of the 24 users had Tysabri for more than 24 months

SallyC 11-13-2009 09:06 PM

Quote:

Originally Posted by Riverwild (Post 589391)
- 18 of the 24 users had Tysabri for more than 24 months

That kind of changes the ratio right there, doesn't it?

Great detective work, River..:)

Natalie8 11-13-2009 10:06 PM

Thanks for the updates RW. I was just thinking mathematically today now that we have all the numbers.

The average number of infusions among the Tysabri patients is noted on this online list of cases. This is also called the mean. You add up all the numbers together and divide by the amount of numbers. The list states that the mean (average) is 25.

Median is also useful to think about in terms of risk assessment. You arrange the numbers in order and then select the one in the middle.

12, 13, 14, 14, 17, 22, 24, 24, 24, 25, 25, 25, 28, 29, 30, 30, 31, 33, 34, 34, 35, 35, 36, 44

Thus the median is 26.5.

Here the mean (average) and median are fairly close to one another which tells us that it's a good bet that the "risk" of getting PML is somewhere in the mid twenties in terms of infusions (just based on the actual numbers, not what people have taken in the past etc.)

However, if the array of numbers was not so evenly distributed the mean (average) wouldn't tell us as much. For example, imagine the numbers are

12, 12, 12, 12, 44

The mean (average) of these numbers is 18.6. The hypothetical drug company might say "the average risk of this side effect would come at 18.6 months." We like to think in terms of averages a lot. However, the 44 is the outlier and actually this list would tell us that 12 months appears to be a more risky moment when taking this drug.

Anyhow, seeing all the numbers listed out was quite sobering for me. There seem to be an awful lot of cases in Sept. and Oct. The more numbers we have the better risk profile we get. However, I don't want any more numbers to add to this list! :( Hopefully, Biogen/Elan is working on a way to predict more accurately what the mean and median are as part of the risk assessment. I am still planning on going off Tysabri after #23 or 24 unless something radically changes.

Natalie8 11-13-2009 10:33 PM

It appears that another Tysabri PML patient has recently died. So sad. :(

http://www.everydayhealth.com/blog/t...#comment-22779

lady_express_44 11-14-2009 03:26 AM

Quote:

Originally Posted by Natalie8 (Post 589433)
It appears that another Tysabri PML patient has recently died. So sad. :(

http://www.everydayhealth.com/blog/t...#comment-22779

I wonder which of the patients this is, based on the list RW posted. Her brother reported her as "patient #14", said she was dx with PML in early Oct, yet it seems she was American ...?:

Quote:

Originally Posted by Riverwild (Post 589391)

Cherie

Natalie8 11-14-2009 03:37 AM

Cherie, I wonder if the brother of the patient was including the first 3 PML cases in clinical trials when he said she was the 14th case. If so that would make her patient #11 on the online list of post- marketing cases--which is someone from the USA.

lady_express_44 11-14-2009 03:47 AM

I wondered about that too, Natalie, but he had said she was dx in Oct, and we knew about the 14th case (including the trial patients) back in late July before Biogen quit giving us updates. :confused:

Cherie

Riverwild 11-14-2009 11:16 AM

It's believed she is P11 post marketing. Her case came to light after Biogen shut off the PML reports, which is why there were no details listed for her on the chart. I am not sure why there's a discrepancy in when she was diagnosed, and I don't think it really matters anymore.

My prayers go out to her family and I give thanks that her brother cared enough to come out and let people know. It had to be very hard to come and tell what happened to her so soon after the loss of his sister.

The family is permitting the medical community to research her case so that the rest of those of us on Tysabri may benefit, and for that alone we owe them our gratitude and thanks.

lady_express_44 11-14-2009 03:14 PM

Quote:

Originally Posted by Riverwild (Post 589562)
It's believed she is P11 post marketing. Her case came to light after Biogen shut off the PML reports, which is why there were no details listed for her on the chart. I am not sure why there's a discrepancy in when she was diagnosed, and I don't think it really matters anymore.

Or, he had the number wrong and she was #20 (from the US), who was dx in early Oct.

We did know about #11/#14 US, from the final July 24th report on the Biogen's site:

http://investor.biogenidec.com/phoen...82&p=irol-TPME

But, as you said .... which-ever the patient, it's a sad loss. :(

Cherie


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