[ANNagain]

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

[Snoopy]

Here is a link to the story:

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

[GladysD]

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]

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]

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]

I guess no one read the article cause ...

"No cases of PML have been diagnosed in Tecfidera patients"

"Including the two case reports published Wednesday, a total of four patients have been diagnosed with PML since Fumaderm was approved in Germany in the mid-1990s for psoriasis, Biogen said. However, in two of the cases, patients had additional risk factors for developing the condition. Biogen has said in the past that the PML rate is consistent with what medical literature expects for patients with autoimmune diseases such as psoriasis"

Tecfidera is NOT Fumaderm.

[karilann]

I'm still in! Waiting for someone to call me to set up a pharmacy. This report does not scare me. If you read it carefully, there were different situations with these two cases.

My doc is going to monitor my white cell count a little more often at first and that is fine with me.
Remember too....this drug has been fought against by the other major drug companies because they know its going to make many other drugs unpopular.

[Sparky10]

Originally Posted by EddieF

I'll know if it's helping within 1st week which hopefully will be next Monday.

How will you know if it's working, Eddie? It is like all the other DMDs that supposedly merely slow down progression. Have you read something that says it calms a flare?

[GladysD]

Maybe, baffling, to not want to take that risk, as minimal, as it appears, but, yeah..nothing is 100%. I'm young, active, and have young children. That miniscule risk, is too much risk for me.

{Edit to add}: Granted, a plane could fall from the sky, land on me, a car could drive into me, I could get cancer. But, you know, it just is what it is. My body, My choice, so to speak.

[My3sons]

Just saw my nero today and he suggested that I look into this new pill. I did shots for years when I was first DX but stopped because of injection site infection. I've been taking Copaxone for the past 2 months but I HATE the injections, even with the autoject. He said this is less expensive then a lot of the other drugs and he has several patients on it (of course not for that long), with good results. They are showing improvements in a very short time. I'm all for trying anything that will keep me moving longer. I've been off any type of meds for awhile (about 6 years), but having lots of increased problems. That's why I started with Gilenya (high blood pressure), then went to Copaxone and I think I'm going to try Trecfidera. I'll wait till next month when I'm off work for the summer. I don't like switching drugs all the time but did I mention that I HATE injections.