Sunday, 11 December 2016

Tysabri and less tingles

I know I know. It's been an age since I posted. Slap my wrist, and all that.
However, I feel that considering how the year has gone my delay is justified. It's been busy, and emotional, and tiring and just bleergghh. But things look to be on the up....thank god.

Firstly, the bipolar meds have finally been tweaked enough that I feel positively 'normal' (whatever that is!) so I feel like I can draw a bit of a line under that fiasco. No longer will I be manically obsessing over things, and being Mrs McTwitchHands. I feel like my personality has come back and I can see things positively now. I used my manic energy to sew things, which yes I became obsessed with, but it all culminated in me selling my wares at a Christmas market this week. I felt like I'd turned the situation around, and I felt so proud of myself.

Along with this also comes the new MS development – Tysabri.
Basically It's taken the best part of 6 months to sort out my treatment after having two relapses this year. There was a lot of debating and umming and ahhing, and I finally went with the drug Campath. Except I didn't. Because someone died who was having it in the MS unit. Awfully sad, and it made me think twice about the risks of having such a powerful and long-lasting treatment. Though good in some ways, the fact that I would have 5 days of nasty infusions then nothing for a year, ended up filling me with dread. After all, what if I got any bad side effects? There was nothing that could be done. It's not like I could stop taking the tablets, or stop the injections.

No, I couldn't do it. So after Campath, the next option was Tysabri. An infusion once a month, that lasts an hour, and potentially could reduce relapses by 80%.

Of course, this treatment also comes with its serious risks. There is a very small chance of developing a brain infection called PML which can lead to severe disability and even death. Scary stuff. Though luckily for me, I don't have an underlying virus called the JC virus. That means my odds of picking up PML are about 1/10,000. If I'd had the virus that would have dramatically dropped to 1/1000.
I decided the risk was worth the benefits (it really is meant to be a great drug), so I had my infusion last Friday. It was as peachy as someone stabbing you in the arm ever can be, and it was simple. My MS nurse said, as I'm rigged up to the drip, it was actually 'enforced rest' for a couple of hours. True enough...though that does make it sound positively pleasant. It wasn't. Hey ho could have been a lot worse I guess. My next infusion is on the 6th January, so I've got the fun of Christmas and New Year before I get stabbed again.

I heard great things about how effective Tysabri was from others having the treatment at the same time, and I have to say I'm seeing benefits already. It may be psychological, or coincidence, but my walking definitely seems better. I'm able to walk further without stiffening up, and I'm getting less achy pain in my legs and less tingling. I should be ecstatic, but I'm too much of a realist. Surely it can't be that effective?1 Whatever the reason though, improvement is good. It's looking like 2017 is going to be a better year.

I will dutifully keep you posted, and until then. Deck those friggin' halls!