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-   -   PML in European drug dimethyl fumarate (https://www.neurotalk.org/multiple-sclerosis/187477-pml-european-drug-dimethyl-fumarate.html)

ANNagain 04-24-2013 06:32 PM

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 :(

EddieF 04-24-2013 07:43 PM

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.

SallyC 04-24-2013 10:10 PM

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"

ANNagain 04-25-2013 09:59 AM

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

Kitty 04-25-2013 10:30 AM

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.

Debbie D 04-25-2013 04:36 PM

When I saw "PML" in the news report I'd read, I crossed that drug off my list:(

Just find a cure, already...

Snoopy 04-25-2013 04:45 PM

Here is a link to the story:

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

GladysD 04-25-2013 06:48 PM

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...

Natalie8 04-25-2013 07:38 PM

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

EddieF 04-25-2013 08:31 PM

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.


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