Week 29

I've been speaking about stuff other than Gilenya recently, and I do apologise. You aren't interested in the previous medications that I've tried that haven't worked; you want to hear about the tablet I take that does work.

Gilenya does have a bad press. The license was withdrawn after somebody died after taking a single dose, this time last year. Scary right? Well, when you take Gilenya, it reduces your heart rate. My pulse varies between 70 and 85 on average, and it dropped to 67 after my first dose. That isn't an issue, but it is believed that the person who died had underlying heart problems which would've contributed to the fatality. So it isn't the actual drug that can kill you, but a side effect can. Well, that's okay then, right? No, it isn't, is it?

So how do you know whether you have underlying heart problems that possibly haven't surfaced yet? We don't, that is why you have to have your first dose of Gilenya in a hospital where you have spend at least 6 hours (take a book). You are wired up to an ECG machine and the activity of your heart is constantly monitored. If they have any concerns, they'll keep you in overnight. Nothing is left to chance.

This is why I can (rightly or wrongly) state that I believe that Gilenya is initially a safe drug to take. There. I said it. Put my head on the chopping block then, but that is MY opinion, a patients perspective. Nobody knows the long term effects of Gilenya. That's a 'wait and see' situation, time will tell, etc, etc. But thats just like all disease modifying drugs, as they've only been around for 20 or so years at the most.

I'm not sure about the risks of... you ready for it?... Progressive Multifocal Leukoencephalopathy (PML) as I believe it works in a similar way to Tysabri, which does have a PML risk. Especially if you are JC virus positive like me.

I would like to thank Apple for the auto correct function on their devices that kicks in and predicts Leukoencephalopathy after the first five letters.

Have a happy Easter, all. Eat too much chocolate and drink too much beer. I will be.

Dan