Week 45

I mentioned the other week that they believe me to be entering the secondary progressive phase of the illness. I also said that I know that I have had secondary progressive MS (SPMS) for three years at least.

When I 'officially' get the word progressive attached to my diagnosis, they will withdraw my eligibility to have Gilenya. Sounds a bit harsh, right? Well, yeah, it is, I suppose. It's not the end of the world though. I know I am repeating what I have already said, but they have (only) just started looking into medicating people that are more progressed than the relapsing remitting stage of MS. Before a progressive diagnosis would mean you were given a wheelchair and sent on your way, but things are starting to change for (us?) more progressed MSers

This is where I get to my point. I have registered an interest with a drug trial for people with SPMS. It supposedly starts in the Autumn of this year. Now anybody that knows anything  about drug trials will tell you that that means it will more than likely start this time NEXT year. That should fit in nicely with my SPMS diagnosis. 

The trial itself is called MS-SMART  - who makes these bloody acronyms up? It is being funded by the Medical Research Council and the MS Society. It will use three different drugs. You will be given ibudilast, riluzole or amiloride. 

I've never heard of any of these drugs, but they have all shown promise when used on people with SPMS, so as soon as I've finished this blog, I'll be off to Wikipedia to do some research. I won't be reading about the side effects though!

I don't know what will happen with this blog when Gilenya has been withdrawn. I'll probably keep it going. I mean, Gilenya rarely gets a mention these days anyway. What it has helped with are stable, so no news really is good news. I'll just stop advertising it as a Gilenya diary, I suppose. 

Enjoy the sun, if you can. 

Dan