NeuroTalk Support Groups
Page 1 of 2 1 2
Show 40 post(s) from this thread on one page

NeuroTalk Support Groups (https://www.neurotalk.org/)
-   Multiple Sclerosis (https://www.neurotalk.org/multiple-sclerosis/)
-   -   More data on the Tysabri PML cases (https://www.neurotalk.org/multiple-sclerosis/91127-data-tysabri-pml.html)

komokazi 06-26-2009 10:18 PM
More data on the Tysabri PML cases
 
Sorry don't want to get into trouble linking to this

Go to the elan.com website and poke around in the medical information section.

Detailed info on 9 of the 10 cases, note cases 8 and 9 have very low JC Virus counts - corresponding to catching it early - also not that both got treated with steriods prior to PML diagnosis.

komokazi 06-27-2009 07:56 AM
Quote:
Originally Posted by komokazi (Post 529334)
Sorry don't want to get into trouble linking to this

Go to the elan.com website and poke around in the medical information section.

Detailed info on 9 of the 10 cases, note cases 8 and 9 have very low JC Virus counts - corresponding to catching it early - also not that both got treated with steriods prior to PML diagnosis.
Also of note is that the EU docs continue to treat these new symptoms with steroids (Probably worsening the outcomes) before PML is conclusively ruled out

Natalie8 06-27-2009 12:48 PM
Quote:
Originally Posted by komokazi (Post 529540)
Also of note is that the EU docs continue to treat these new symptoms with steroids (Probably worsening the outcomes) before PML is conclusively ruled out
In this report I only see that case #9 had steroids before the PML diagnosis was ruled out. Am I missing something with case #8?

komokazi 06-27-2009 12:58 PM
Quote:
Originally Posted by Natalie8 (Post 529672)
In this report I only see that case #9 had steroids before the PML diagnosis was ruled out. Am I missing something with case #8?
Sorry, confused it with case 6 in the EU.

lady_express_44 06-27-2009 01:33 PM
I keep getting lost and ending up at a form called an Information Request, where you need to be a doctor or something ...

I don't think there's any problem with posting the link, is there Chris? If there is, could you just describe step by step how to get there, or send this to me by PM?

Thanks!

There are many people in the US who have been treated with steroids while on Tysabri, and of course the only reason they would is because they have break-through disease activity.

Anyway, any person/people treated with steroids (because of breakthrough activity), who then ended up with PML, would have been in the beginning stages of having it anyway. They wouldn't appear at their doctor, agree to steroids, THEN suddenly develop PML from that procedure ... :confused:

Not using steroids could potentially have made the PML less agressive, but using them didn't "cause" it.

Cherie

komokazi 06-27-2009 01:54 PM
Quote:
Originally Posted by lady_express_44 (Post 529688)
I keep getting lost and ending up at a form called an Information Request, where you need to be a doctor or something ...

I don't think there's any problem with posting the link, is there Chris? If there is, could you just describe step by step how to get there, or send this to me by PM?

Thanks!

There are many people in the US who have been treated with steroids while on Tysabri, and of course the only reason they would is because they have break-through disease activity.

Anyway, any person/people treated with steroids (because of breakthrough activity), who then ended up with PML, would have been in the beginning stages of having it anyway. They wouldn't appear at their doctor, agree to steroids, THEN suddenly develop PML from that procedure ... :confused:

Not using steroids could potentially have made the PML less agressive, but using them didn't "cause" it.

Cherie
Of course there's a problem posting the link as it is marked do no distribute.

I thought you knew everything and here you are needing detailed directions that took me 5 minutes playing around to figure out. I've given you the hard part. It's definitely on Elan's website and not Biogen's and there is no requirement to type in a Medical License #.

lady_express_44 06-27-2009 02:39 PM
Quote:
Originally Posted by komokazi (Post 529694)
Of course there's a problem posting the link as it is marked do no distribute.

I thought you knew everything and here you are needing detailed directions that took me 5 minutes playing around to figure out. I've given you the hard part. It's definitely on Elan's website and not Biogen's and there is no requirement to type in a Medical License #.
How would I know that it is marked "do not distribute" if I haven't found it?

Holy crap ... excuse me for asking! I am NOT computer savy, and never claimed to be.

Cherie

FaithS 06-27-2009 05:05 PM
KomoKazi --

Here's what I did:
  • Went to elan.com
  • Scrolled down. On the L side, under Medical Information Requests, I clicked U.S. Medical Information.
  • When I clicked "No" at "Are you a healthcare professional practicing within the United States, and do you understand and agree to these terms?", I received this reply: "The Elan Medical Information Database is only available to healthcare professionals within the United States."
Do you have any different suggestions regarding how to access the site?

Thanks,
~ Faith

komokazi 06-27-2009 08:09 PM
Cherie[/quote]

Quote:
Originally Posted by FaithS (Post 529749)
KomoKazi --

Here's what I did:
  • Went to elan.com
  • Scrolled down. On the L side, under Medical Information Requests, I clicked U.S. Medical Information.
  • When I clicked "No" at "Are you a healthcare professional practicing within the United States, and do you understand and agree to these terms?", I received this reply: "The Elan Medical Information Database is only available to healthcare professionals within the United States."
Do you have any different suggestions regarding how to access the site?

Thanks,
~ Faith
Select Tysabri for Chrohns, Type "PML" in the search box, and then answer the are you healthcare professional question. You * won't see the data if you type "No" as the data is labeled for healthcare professionals only.

Chris

*edit

lady_express_44 06-27-2009 09:03 PM
Quote:
Originally Posted by komokazi (Post 529818)

Select Tysabri for Chrohns, Type "PML" in the search box, and then answer the are you healthcare professional question. You * won't see the data if you type "No" as the data is labeled for healthcare professionals only.

Chris

*edit
Hmmm... didn't think to type "Tysabri for Crohn's" instead of "Tysabri for MS". :confused:

I guess that's what we were doing wrong, Faith!

Cherie


All times are GMT -5. The time now is 01:21 AM.
Page 1 of 2 1 2
Show 40 post(s) from this thread on one page

Powered by vBulletin • Copyright ©2000 - 2025, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise (Lite) - vBulletin Mods & Addons Copyright © 2025 DragonByte Technologies Ltd.