Week 40

I have been on Gilenya for the same amount of time as a gestation period of a human baby. Where does the time go?

I went to see my Neuro last week for the usual six monthly check up. I've been given an extended disability status scale (EDSS) of 6.5. I don't know how the point five has come about. I thought it was a straightforward one to ten, but there you go. 

We also spoke about the fact that I am entering the secondary progressive stage of the illness. I've spoken about this before, so I won't bore you twice on the same subject. That would be really boring! The bottom line is they will more than likely stop treating me with Gilenya in a year's time. At least I've been given a year's notice. The only concern I have with this is the theory that once you've stopped taking an immunosuppressive drug like Gilenya, your immune system kicks back in again, only it's more aggressive. Fingers crossed, I won't have slipped any further down the EDSS scale and they can see that my stability IS cost effective, and they keep me on it. It's all about the money at the end of the day. 

She also wrote me out a script for a drug called tinizidine (trade name Zanaflex). This is an anti spasticity drug, like Baclofen. My legs have stiffened up a fair bit of late, and as I've already said about my reluctance to increase the Baclofen, it was agreed I should take something else. That's where the tinizidine comes into play. It can either be taken alongside Baclofen, or it can replace it altogether. My plan is to do the latter. You can't go in at the desired dose, but you have to titrate the drug slowly. I am up to three 2mg tablets per day. I think you can go up to 16mg per day. I know I can go a lot higher than what I'm on at present. The plan is to hit 12mg, then cut down on the Baclofen and see how it goes. 

So what next on the SPMS and treatment front?  Keep my ear to the ground and try to get my backside on a drug trial for people that are SPMS. That something that they're finally looking into. Up until recently, if the word 'progressive' was included within your diagnosis, you were put in the corner of a room to waste away, because it was universally believed that there is nothing they can do for you. 

They are recruiting for people with SPMS to go on a Tysabri trial that I know of. They're also recruiting primary progressive MSers for a drug called Ocrelizumab, so we've all got some hope, regardless of where we're at with this illness, so I'm not prepared to give up yet, and neither should you be. 

Speak soon,

Dan