Friday, 18 January 2013

Week 19

Over the last month and a bit, I have noticed a considerable improvement in my fatigue. Now I know last week, I mentioned how my Amitriptyline reduction had helped me with my cognition, but that's not the same as fatigue.

Fatigue if you have MS, you will know only too well isn't just a case of being over tired. It's physical too. It's like the muscles in your body join your brain and go 'on strike' and any kind of movement becomes so much more laboured and tiring. That's a vicious circle for you.

Anyway forget all that. Fatigue - or lack of. I am convinced that the disappearance of said fatigue is because of the Gilenya. Gone are the days when I would fall asleep on the settee after lunch. Forget having to go and lay down on the bed in the afternoon for forty winks. I don't even have a single 'power nap' either. Who made that stupid saying up anyway?

I experienced the very same feeling a couple of months after I started taking Tysabri. As the two medications work in a similar way, I see no reason why the Gilenya shouldn't have the same positive effects.

At my recent clinic appointment, I asked my consultant her opinion. She told me that my fatigue situation could well be because of the Gilenya, but she couldn't confirm its relevance She couldn't give me any information about improvements because of the drug as apparently, I was the second (or 3rd) patient at the Royal London Hospital to go on the drug and (I think) they were the first hospital to start administering it since its re-issue. Ok, fair enough, but thanks for, erm, nothing.

That might sound a bit harsh; the data isn't there yet as it is such early days, but there were a good few years of trials, and don't forget it was licensed once before, but they had to withdraw it for safety issues. And it is administered globally. Think I'll have to do a bit of research myself on this world wide net.

If they are looking towards me for their data, there's at least one person whose fatigue is virtually non-existent because of Gilenya.

Dan.

1 comment:

  1. 'Power nap' A "septic" term I'm afraid. Coined by James Maas, a septic and social psychologist, professor at Cornell University.

    Source : Wikipedia.
    Mwah xx

    ReplyDelete