In simple terms JCV is a virus that lots of people have in their system, there's a decent chance that as you sit here reading this now you may indeed have this virus, don't panic though, for you it will probably never cause a problem, your immune system keeps it nicely in check and its pretty harmless. The problem comes when your immune system doesn't work the way it should, such as when you are taking certain immune suppressant medication. Which is where the Tysabri comes in. Taking this drug when you are positive for JCV puts you at risk of a rare and incurable brain disease called PML (if you're desperate to know what it stands for click here) which often proves fatal. My risk of contracting PML has gone from 1 in 10,000 to 1 in 118 at best. So there in lies the problem. To continue taking Tysabri or to stop. I know most of you non-MSer's out there will be reading this and thinking its a total no brainer (pardon the pun) and I'd be crazy to carry on. A few of my friends have expressed as much, wanting to know what I'm playing at even considering carrying on taking it and putting myself at such a risk. My dilemma........... it works!!
The other option is a new tablet that's just been given NICE approval. Again I can hear you thinking "So what's the problem?" Well this tablet is only around 70% as effective as the Tysabri, and to be fair isn't without its potential issues. But its a tablet, no more IV's in dodgy veins, no more days at the hospital, so what's not to like right? Well.....
Before I started to take Tysabri nearly 6 years ago I'd been on a drug I had to inject myself with at home. The side effects made were horrible, and amongst others things made me feel like I had flu for 48 hours after each injection. Not a cold, full on hurting all over, shivering, joint aching flu, bad enough to stop me sleeping at night and meaning I was living from one dose of paracetamol to the next. Given that I had to inject 3 times a week this pretty much meant I had one day a week where I felt anywhere near normal and could actually manage a reasonable nights sleep. Add to this the fact that I was relapsing every 3 months and all in all things were pretty miserable. My mobility was getting slowly worse, and I was facing up to the fact that the way things were going my wheelchair days were advancing fast. I'd thrown out all my pretty shoes and resigned myself to a life of granny shoes and pumps.
Since starting on Tysabri I've had 4 relapses in 6 years. It's given me my life back. It's allowed me to be able to plan ahead, to book amazing holidays and be fairly certain I'm not going to relapse a few weeks before I go. I've been to Sri Lanka, Florida, New York and California. It's allowed me once again to buy pretty shoes, pretty shoes with heels!! A pair of the highest heels I've ever owned, and bright red ones too!! Not only did I buy them, I can walk in them, I've worn them out partying and believe it or not I've even danced in them. It improved my confidence so much I learned to drive.
So what does Tysabri mean to me....... it lets me dance in heels!!
Maybe now you can see why the decision is so hard, how do I give all that up?
So the choice is stay on the drug and take the risk it might kill me, or come off the drug and pretty much guarantee my MS will get worse? Oh and as a small aside I have now discovered that withdrawal from the drug can cause a massive immune reaction which can cause really severe relapses and in some cases is fatal. Some choice huh? I've decided I'm no where near grown up enough for this decision. So if someone could just make it for me please?
C x
The other option is a new tablet that's just been given NICE approval. Again I can hear you thinking "So what's the problem?" Well this tablet is only around 70% as effective as the Tysabri, and to be fair isn't without its potential issues. But its a tablet, no more IV's in dodgy veins, no more days at the hospital, so what's not to like right? Well.....
Before I started to take Tysabri nearly 6 years ago I'd been on a drug I had to inject myself with at home. The side effects made were horrible, and amongst others things made me feel like I had flu for 48 hours after each injection. Not a cold, full on hurting all over, shivering, joint aching flu, bad enough to stop me sleeping at night and meaning I was living from one dose of paracetamol to the next. Given that I had to inject 3 times a week this pretty much meant I had one day a week where I felt anywhere near normal and could actually manage a reasonable nights sleep. Add to this the fact that I was relapsing every 3 months and all in all things were pretty miserable. My mobility was getting slowly worse, and I was facing up to the fact that the way things were going my wheelchair days were advancing fast. I'd thrown out all my pretty shoes and resigned myself to a life of granny shoes and pumps.
Since starting on Tysabri I've had 4 relapses in 6 years. It's given me my life back. It's allowed me to be able to plan ahead, to book amazing holidays and be fairly certain I'm not going to relapse a few weeks before I go. I've been to Sri Lanka, Florida, New York and California. It's allowed me once again to buy pretty shoes, pretty shoes with heels!! A pair of the highest heels I've ever owned, and bright red ones too!! Not only did I buy them, I can walk in them, I've worn them out partying and believe it or not I've even danced in them. It improved my confidence so much I learned to drive.
So what does Tysabri mean to me....... it lets me dance in heels!!
Maybe now you can see why the decision is so hard, how do I give all that up?
So the choice is stay on the drug and take the risk it might kill me, or come off the drug and pretty much guarantee my MS will get worse? Oh and as a small aside I have now discovered that withdrawal from the drug can cause a massive immune reaction which can cause really severe relapses and in some cases is fatal. Some choice huh? I've decided I'm no where near grown up enough for this decision. So if someone could just make it for me please?
C x
