My Ankylosing Spondylitis: ‘Nothing to worry about’. They were lying.

I had an MRI scan done in August 2006 and was told that if the letter came through about the results with a very long lead time for the meeting to discuss it, it meant I had nothing too much to worry about as someone would have checked it to see if anything needed to be done quickly. So I go along today (yes, nearly 8 months later!!) in a pretty good frame of mind bearing in mind ‘I had nothing to worry about’ and was a bit shocked to find out the opposite was true.

I’ve had a bad year so far with my AS, with only about 2 ‘good’ weeks this year – lots of pain and stiffness has blighted my every (slow) move so far in 2007. So I was looking forward to discussing my results with my excellent consultant. However I was told things weren’t looking too good inside me, and that my immune system is attacking my sacro-iliac joints to pass the time, and thus I would need to start a course of drug treatment. I’m trying to ignore the fact that if it doesn’t work I’ll be put on a course of injections of a drug I’m nervous about because long-term effects are not yet known. As Ibuprofen normally sorts me out (slowly) I hope the first treatment works and I can avoid the second for the time being.

So, from Monday I start a course of Methotrexate. Originally designed as a chemotherapy drug, I find the prospect scary and daunting. 2 weeks each of 2.5mg, then 5mg, then 7.5mg and then 10 weeks of 10mg. Assuming that the side effects don’t wreak havoc with my rather insubstantial insides I will then get assessed to see if it’s working. I also need monthly blood tests to check my liver isn’t freaking out and I have to take folic acid every day – not because I’m pregnant, but again to help the liver. They’re 5mg tablets which is apparently 10 times stronger than over-the-counter folic acid so it’s real man’s stuff!

All in all then, a pretty crap afternoon, and it wasn’t until I’d walked out rather shellshocked that I started to feel angry about the long delay in getting my results. I could have started this treatment months ago, but that’s the NHS for you