I doubted that the medication has anything to do with my current eye issues, but I didn't want to take a chance with my eyesight, so I rang up my MS specialised nurse and left a message with them to contact me. After speaking with my consultant (via my nurse), I am expecting an appointment with an ophthalmologist who will examine my eyes. Lets see where that gets me. They don't think it's optic neuritis either, so it's probably nothing.
There has finally been the first case of progressive multifocal encephalopathy (PML) that has been attributed to Gilenya. I think 'finally' is the wrong choice of word, but what I mean is that it was always going to happen. Any treatment that stops the immune system from crossing the blood-brain barrier will have a PML risk.
There are 71,000 MSers worldwide on Gilenya and to date there has been around...?...cases of PML (At this point I was hoping to be able to give you a definite figure as I know there are examples of post Tysabri patients who've sinced moved onto Gilenya and subsequently been diagnosed with PML). These have all been attributed to previous disease modifying therapy - namely Tysabri - but the PML case that's hit the news over the last few days has no link to Tysabri whatsoever. It is the first and it certainly won't be the last.
Tysabri, however, has had 350 odd cases as of April this year, and almost 1 in 4 have died. To be honest, I think they're the lucky ones. No seriously, if PML doesn't kill you, it leaves you heavily disabled. I do apologise if I've caused any offence with that statement, but if I had a choice between those two scenarios, I'd take the easy way out.
Annnyway, so our chances of getting PML whilst on the oral therapy are greatly reduced. I don't know about you, but I have no intention of stopping this tablet a day therapy. If they take me off it, so be it, but until they do, I'll stick with it.
Stay strong.
Dan
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