So..thoughts?
1. Well, firstly, it's a great drug. I can do things now that I struggled with before I started it, and just having a bit more stamina has left me feeling more confident to take things on. This of course, is possibly detrimental considering my tendency to over-do things, but really it's helped my day-to-day life a great deal.
2. It's also stopped my relapses....for now. I don't want to get too positive about it, after all, how do I know I would be having relapses anyway, but as a guide I was having between 1-2 relapses a year before I started it, and since being on Tysabri I haven't had one.
I've had a couple of pseudo relapses, which again could have been the real thing that Tysabri was stalling, but who knows? It's all second-guessing.
3. It really doesn't hurt. Before I started I was terrified of the thought of having a canula put it every month for the infusion, but I quickly learnt that it doesn't hurt at all. Sure there's the 'sharp scratch' as the needle goes in, but aside from that it's fine. I feel silly for ever worrying about it!
4. I now live without side-effects. This is actually a really big deal that I don't take on board enough. When I was on Rebif, Avonex and then Copaxone, I lived with daily side-effects from the medication. Whether it was injection site pain or the flu symptoms I used to get after each injection (which was every day with Copaxone), life was pretty miserable. Now I have no side effects at all. The most I get is feeling tired after my infusion, but as I'm tired most of the time anyway I don't really notice!
5. Tysabri is good, so long as it's safe. I've spoken before about the JC virus, and because I'm negative for it, my risk of developing PML is 1 in 10,000. If I suddenly became JC positive, my risk drops to 1 in 1000. I can honestly say I don't think I would take the chance. Yes, if I came off Tysabri my health would potentially go down hill, but the thing that terrifies me is that as the symptoms of PML are very close to an MS relapse, and therefore I'm worried that I wouldn't know it was PML until it's too late. As it can be fatal, that's a big gamble.
6. It's made me connect with my MS team at the hospital. I know they've always been there if I need them, but physically seeing them every 4 weeks has become a good support for me. I feel like I can discuss symptoms while I'm there, instead of having to bother them on the phone - knowing for sure how busy they are! Because they see me more regularly they can tell when something is wrong. It was them that got me psychological help at the hospital for my depression and anxiety.
7. It gives me hope. When I was first diagnosed there was very little on the market to treat MS. The beta interferon drugs were only reducing relapses by 33%. Copaxone, which was the next drug I tried, reduces relapses by 34%. However Tysabri reduces them by 68%. What will be available in the future? Already stem cell treatment has shown amazing effects, but sadly little long term effects are known yet. However, it does leave me hopeful that someday there may be a cure.
Hmm....it's only when I put it down on 'paper' that I realise how much it's transformed my life.
Tysabri might not work for everyone, but I feel so lucky to have found something that works for me.
Here's hoping there are no hiccups, and I can carry on for another 2 years!
The 25th infusion
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