Home Menu

Site Navigation




advertisement
NeuroTalk Support Groups > > >

PML in European drug dimethyl fumarate

Reply
Page 1 of 3 1 23
 
Thread Tools Display Modes
Old 04-24-2013, 06:32 PM #1
ANNagain ANNagain is offline
Senior Member
  
Join Date: Nov 2011
Location: Boston
Posts: 1,105
10 yr Member
ANNagain ANNagain is offline
Senior Member
 
Join Date: Nov 2011
Location: Boston
Posts: 1,105
10 yr Member
Default PML in European drug dimethyl fumarate
The New England Journal of Medicine reports 2 cases of PML in the European Psoriasis drug that is the main ingredient in Tecfidera (BG-12).

Read here: http://www.foxbusiness.com/news/2013...ain-infection/

And here at Medline: http://www.medscape.com/viewarticle/803100

ANN
Last edited by ANNagain; 04-25-2013 at 09:56 AM.
ANNagain is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
KittyLady (04-25-2013), SallyC (04-24-2013)

advertisement
Old 04-24-2013, 07:43 PM #2
EddieF's Avatar
EddieF EddieF is offline
Member
  
Join Date: Oct 2009
Location: USA
Posts: 702
10 yr Member
EddieF EddieF is offline
Member
EddieF's Avatar
 
Join Date: Oct 2009
Location: USA
Posts: 702
10 yr Member
Default
I started the paperwork ball rolling (actually running not rolling).. today!
I can't wait to give it a go. Hopefully mid next week!

EDIT - just tried your links for 1st time and they're gone. Hopefully it was b.s. like flashcrash. Either way, i'm in.
EddieF is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
ANNagain (04-25-2013), SallyC (04-25-2013)
Old 04-24-2013, 10:10 PM #3
SallyC's Avatar
SallyC SallyC is offline
In Remembrance
  
Join Date: Sep 2006
Location: SW Ohio
Posts: 17,844
15 yr Member
SallyC SallyC is offline
In Remembrance
SallyC's Avatar
 
Join Date: Sep 2006
Location: SW Ohio
Posts: 17,844
15 yr Member
Default
The PML risk is there per this excerpt from a report....
Quote:
"BG12 does cause a drop in lymphocyte counts. As lymphopenia is a risk factor for PML blood counts will need to be monitored and if too low the drug will have to be stopped. In my opinion, the lymphopenia is a manageable side effect of BG12. Based on the number of patient years of follow-up of psoriasis patients on Fumaderm PML and other opportunistic infections are unlikely to be a problem"
__________________
~Love, Sally
.





"The best way out is always through". Robert Frost



~If The World Didn't Suck, We Would All Fall Off~
Last edited by SallyC; 04-25-2013 at 06:48 PM.
SallyC is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
ANNagain (04-25-2013), KittyLady (04-25-2013)
Old 04-25-2013, 09:59 AM #4
ANNagain ANNagain is offline
Senior Member
  
Join Date: Nov 2011
Location: Boston
Posts: 1,105
10 yr Member
ANNagain ANNagain is offline
Senior Member
 
Join Date: Nov 2011
Location: Boston
Posts: 1,105
10 yr Member
Default
Sorry about the links, Eddie. Info was moved from "breaking news" to just news or, the one that angers me, "Business news."

This is an upsetting development as so many people wanted this drug or needed it as they have no where left to stick.
ANN
ANNagain is offline   Reply With QuoteReply With Quote
Old 04-25-2013, 10:30 AM #5
Kitty's Avatar
Kitty Kitty is offline
Wisest Elder Ever
  
Join Date: Jan 2008
Location: Deep South
Posts: 21,576
15 yr Member
Kitty Kitty is offline
Wisest Elder Ever
Kitty's Avatar
 
Join Date: Jan 2008
Location: Deep South
Posts: 21,576
15 yr Member
Default
It's disappointing as my own Neuro mentioned it to me at my last appointment and wanted me to try it. Now......I don't think I'm willing to take the risk.
__________________
These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
Kitty is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
ANNagain (04-25-2013), GladysD (04-25-2013), KittyLady (04-25-2013), SallyC (04-25-2013)
Old 04-25-2013, 04:36 PM #6
Debbie D's Avatar
Debbie D Debbie D is offline
Elder
  
Join Date: Jan 2008
Location: Naperville IL
Posts: 5,169
15 yr Member
Debbie D Debbie D is offline
Elder
Debbie D's Avatar
 
Join Date: Jan 2008
Location: Naperville IL
Posts: 5,169
15 yr Member
Default
When I saw "PML" in the news report I'd read, I crossed that drug off my list

Just find a cure, already...
__________________
Instant Karma's gonna get you-gonna knock you right in the head...John Lennon
Debbie D is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
ANNagain (04-28-2013), GladysD (04-25-2013), KittyLady (04-25-2013), SallyC (04-25-2013)
Old 04-25-2013, 04:45 PM #7
Snoopy's Avatar
Snoopy Snoopy is offline
Magnate
  
Join Date: Sep 2006
Posts: 2,280
15 yr Member
Snoopy Snoopy is offline
Magnate
Snoopy's Avatar
 
Join Date: Sep 2006
Posts: 2,280
15 yr Member
Default
Here is a link to the story:

http://www.foxbusiness.com/news/2013...ain-infection/
__________________
Dx RRMS 1984
Snoopy is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
ANNagain (04-25-2013), SallyC (04-25-2013)
Old 04-25-2013, 06:48 PM #8
GladysD's Avatar
GladysD GladysD is offline
Member
  
Join Date: Jan 2008
Location: New England
Posts: 972
15 yr Member
GladysD GladysD is offline
Member
GladysD's Avatar
 
Join Date: Jan 2008
Location: New England
Posts: 972
15 yr Member
Default
I'm staying away from anything where PML is a risk. Nothing is 100%, even if my blood test says I am not at risk for that infection...yeah...

I have psoriasis, which isn't always in a flare. For that, I'll see my dermatologist for a topical ointment script, if need be...
__________________

.
GladysD is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
SallyC (04-25-2013)
Old 04-25-2013, 07:38 PM #9
Natalie8's Avatar
Natalie8 Natalie8 is offline
Member
  
Join Date: Apr 2008
Posts: 900
15 yr Member
Natalie8 Natalie8 is offline
Member
Natalie8's Avatar
 
Join Date: Apr 2008
Posts: 900
15 yr Member
Default
I just came on Neurotalk to post something about BG-12 (Tecfidera) and PML but I see you already beat me to it! This is very sobering and scary news.

Here is another article on the issue which I think does a very good job of explaining the problem. There are a couple of neurologists in the article who state the risk of PML should be of concern.

http://www.everydayhealth.com/multip...6pLid%3D304022
__________________
On Tysabri and love it.
.
Natalie8 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
ANNagain (04-25-2013), GladysD (04-28-2013), Kitty (04-26-2013), SallyC (04-25-2013)
Old 04-25-2013, 08:31 PM #10
EddieF's Avatar
EddieF EddieF is offline
Member
  
Join Date: Oct 2009
Location: USA
Posts: 702
10 yr Member
EddieF EddieF is offline
Member
EddieF's Avatar
 
Join Date: Oct 2009
Location: USA
Posts: 702
10 yr Member
Default
Fact that it lowers white blood counts makes me & neuro more excited since i'm always 2x limit.
Anyone that gets scared off by a few cases of PML baffles me since it's been in use for a decade pre-modded version.

To each his own, I called Biogen again today to ask if my script got in system yet - nope. They have a mountin of faxes for new patients.

Only thing i'm not looking forward to is first month's side effects but i'll cope & try my hardest to keep swimming 20-30 laps/day throughout. 30 today.

I'll know if it's helping within 1st week which hopefully will be next Monday.
I need a Medrol dose pack in the worst way to stop this flair but i'll wait & hope to regain some of what i'm losing.

MRI of brain & cervical w/wo contrast set for Tuesday. Getting blood drawn tomorrow, i'll have baselines & yes i'll post my mri shots. I know this one will be ugly.
EddieF is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
ANNagain (04-26-2013), ewizabeth (04-25-2013), My3sons (05-24-2013), SallyC (04-26-2013)
Reply
Page 1 of 3 1 23

« Previous Thread | Next Thread »

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts
BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


All times are GMT -5. The time now is 02:07 PM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

All posts copyright their original authors.

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.

Always consult your doctor before trying anything you read here.

Home