PML with Gilenya & past tysabri use

[0485c10]

First case of PML has occued with Gilenya but it was with a patient who had used tysabri in the past...the pml is thought to be caused more from past tysabri use than current gilenya....

for me to be considered is... it may be a first indication that pml risk may continue after tysabri is stopped

&

like prior use of an immune suppressant before using Tysabri increases the pml risk...a combination of tysabri followed by gilenya may also not be a good combination?

something to keep ears open about

http://www.boston.com/Boston/busines...24N/index.html

[0485c10]

I don't want to be guilty of trying in the media...i'm interested in more information being released on it first...

like...
jcv status, if known?
how long was tysabri used before gilenya?
how long was gilenya used before pml symptoms started and then pml confirmed?
how much wash out time was given between the two drugs?

i'd kind of like to know what the first symptoms of a tysabri-gilenya pml?

and how much damage was done & if they survived?

illness doesn't run on internet time, they may not know yet. i hope they publish when the do know.

[0485c10]

Fox news reports that a swiss analyst has said that the case has to be taken seriously but does not define a "trend" yet that a 2nd or even 3rd case coming up within the next few weeks?

http://www.foxnews.com/health/2012/0...brain-disease/

in same article it says that the EMA(European Medicine Agency) is expected to issue their decision on the safety of Gilenya on April 20th. Next Friday...the review started after the death of a US citizen within 24 hours after taken the first dose.

[Daisy Dead Petals]

scary. been on both.

[0485c10]

This article adds the information that the patient was jcv+ and had been on tysabri for 3 years. This article says that biogen/elan recommend 3 month washout period between the 2 meds, but it is not known how long of a dry out period was done.

This is the article from Ireland where Elan is(developers of Tysabri) swiss drugmaker Novartis is the manufacturer of gilenya...so i'm certain there will be some finger pointing, making it more difficult to get the facts.

http://www.irishtimes.com/newspaper/...314729546.html

[Scooter24]

Gee and everybody thought it was so safe, this is the exact reason I won't even think about BG12 until it has been out for more than a year. I'll stick with TY at least we know what to watch for.

[lindaincolorado]

I was at a RMmsC seminar yesterday. Dr Vollmer said 26 doses of Ty, off 3 months then Gilenya.

[0485c10]

Originally Posted by lindaincolorado

I was at a RMmsC seminar yesterday. Dr Vollmer said 26 doses of Ty, off 3 months then Gilenya.

linda, please explain what you mean? from your past post you have had much more than 26 doses of Tysabri...66 you wrote in another post...are you saying here that dr. vollmer plans to start people jcv+ on tysabri for 26 infusion and then switch them to G? or was he saying that anyone already on ty that find out they are jcv+ have to switch after 26 infusions?

and what does that mean for you? aren't you jcv+ and already passed 26 infusions?

Originally Posted by Sequoia

It was first tested in Japan probably because it's a development (synthetic) of a folk remedy popular in Japan & China for centuries. And they probably were expecting it to be safe because the natural folk remedy is so benign.

makes me a little more concerned about BG-12 which is suppose to be safe too.

but bg-12 has shown a better saftey profile in the trials than gilenya. cross my fingers and hope that remains true.

sometimes it seems MS was an easier disease to have when there was only 4 meds to choose from..

[batman12]

bg-12 is not a new drug - it has been in use for a number of years in treating psoriasis.

My first neuro offered to prescribe it to me off label

[FAE fan]

Hi batman12,

Can you please share how you will obtain BG-12 prior to FDA approval?

I look forward to hearing back from you!