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-   -   Patients Sue Biogen over PML from Tysabri (https://www.neurotalk.org/multiple-sclerosis/193953-patients-sue-biogen-pml-tysabri.html)

Debbie D 09-12-2013 07:25 AM

The woman I know is also JC+...the MS center she goes to is infamous for pushing Tysabri-I know several people who go there, and they're all on it. A neighbor, who was recently dxd, is also on it and is also J+. I couldn't believe my ears...

IMHO no DMD is 100% safe. I was on Copaxone, and I look like the moon with so many craters. So it's a question of quality of life...you take your chances, hold your nose and jump in...

Sparky10 09-12-2013 07:57 AM

Sounds like a frivolous lawsuit. Or they should be suing their doctor for prescribing a medication when s/he did not take advantage of the very available info. WE all knew about it. There's no excuse for a doctor not to. I believe by the time the people in the story filed their lawsuit, Tysabri had already been taken off the market and put back on. That info was not hidden from anyone.

Lynn 09-12-2013 08:50 AM

Well, I certainly could never say that I am not informed - and for those who aren't - why not? The information is out there. I don't believe there has been any conspiracy of silence about this.

SallyC 09-12-2013 11:13 AM

Quote:

Originally Posted by Lynn (Post 1014108)
Well, I certainly could never say that I am not informed - and for those who aren't - why not? The information is out there. I don't believe there has been any conspiracy of silence about this.

At first there was!!!:mad:

Lynn 09-12-2013 07:02 PM

Yes - you are right Sally, I imagine there was a lot of stuff going on before the initial withdrawal of the drug - and in the early stages thereafter. I guess it probably only became common knowledge after the problem became to unwieldy to hush up (as lots of these things do). For those people who were affected, then they deserve everything they can get. I am just saying that for people like me, I know the risk profile (or at least I think I do :eek:).

Debbie D 09-12-2013 09:29 PM

It has a black box warning,right? Does that mean that patients who agree to take it have to sign a waiver?

Jules A 09-13-2013 10:27 AM

Quote:

Originally Posted by Debbie D (Post 1014256)
It has a black box warning,right? Does that mean that patients who agree to take it have to sign a waiver?

Meds with a black box warning only require documentation that the prescriber reviewed the target, risks, benefits and alternatives with the patient. Any prudent prescriber makes very certain to cover this clearly both to be fair to the patient and also cover their license.

ANNagain 09-13-2013 10:30 AM

Debbie, since this drug is given IV, I'm not sure the patient sees the Black Box. They certainly should know from materials they get and a discussion w their MD.

Hi Jules! Cross-post.
ANN

Jules A 09-13-2013 10:34 AM

Quote:

Originally Posted by Lynn (Post 1014226)
Yes - you are right Sally, I imagine there was a lot of stuff going on before the initial withdrawal of the drug - and in the early stages thereafter. I guess it probably only became common knowledge after the problem became to unwieldy to hush up (as lots of these things do). For those people who were affected, then they deserve everything they can get. I am just saying that for people like me, I know the risk profile (or at least I think I do :eek:).

But my thoughts are whenever a new medication comes to market, especially with a disease as tricky as MS and when you are fiddling around with immune systems, it is fair to expect the consumers are fairly well versed on the possible risks of a brand new medication having dangerous side effects as time wears on.

I am so thankful and my heart breaks for those brave souls who try drugs early on and are the ones who pave the way for others however I do not think it is a matter of malpractice on any level unless there were indications during the trials that were covered up.

These kind of lawsuits scare me because I believe they hinder future trials of new medications.

karilann 09-13-2013 10:39 AM

Just curious.....did they have you sign a release before taking Tysbri? I think "their" lawyers will still have a hard time fighting this lawsuit. Judges don't take kindly to this stuff and go for the deep pockets. If enough people are negatively affected, we will soon see a class action suit since its the lawyers that seem to really benefit from these suits.


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