And so it goes on

I had an appointment this morning at the dermatology clinic for a review of my polymorphic light eruption (PLE) and a check on how the UV desensitisation was going. A came with me as his memories of the last couple of summers are different to mine - one of us is obviously getting Alzheimers LOL!

Before we went I had more or less decided to take next year off the desensitising just to see how effective it had been. Last year I had the treatment in the narrowband UVB machine, starting early February and finishing early-mid March. I had my first proper break out on May 11th. Yes, I had been 'foolish' insofar as going around in warm, sunny weather without long sleeves or sun cream. When I reacted I was devastated. However it never got as bad as the previous year (pre-treatment). Yet as the summer went on I slowly but surely reverted to that previous year's sensitivity levels.

This year I had the treatment in the 'other' machine (UVA & UVB), starting early March and finishing just before Easter (mid April). I broke out on Whit Sunday. Again it was probably my own fault for sitting in my friend's garden (too hot in the house, it was a sauna-like day) for 4 hours. I sat under an umbrella as much as possible but it was probably asking for trouble really. That evening I felt exhausted (could be down to the alcohol consumed or not) and very spotty, and a little itchy. This year I'd been a bit more careful and not taken so many chances, so I was particularly put out that although the treatment had started a month later it had only bought me 2 weeks extra freedom. And, like last year, as the summer has progressed I have once again reverted to pre-treatment levels of sensitivity. In fact in August my skin got spotty just from putting the washing out (grump!).

This is why I'd like a year off treatment to see how next year goes. The weather is rather an important, and uncontrollable, variable but if going into Southampton 3 times a week for 5 weeks for 20 minutes at a time (from entering to leaving) is not really going to get me more than 6 weeks or so's freedom is it really worth it? I think not, especially as all that radiation treatment ('cos that's what UV is) could possibly upset one of my moles and turn it cancerous.

So, after having a good cry in front of the SHO this morning, I got a chat with Dr Ardern-Jones himself. He is having second thoughts on the diagnosis of PLE. I have got to provide samples of my pee and poo, AND have blood taken (needles!!!!!!) all on the same day - yes I HATES needles, but if having regular jabs would calm all this down I'd do it. Oh, and none of them can be exposed to light. I have to catch them in foil covered containers, otherwise they will be contaminated and not be testable - any bright ideas on a postcard please.

That lot will get sent away and tested, mainly for porphyria with some blood being tested for lupus. If that lot come back negative I get a trip to Amersham/High Wycombe for some in-depth screening - they have better kit than Southampton. I had a choice between there, Cardiff and London. If I was on my own I'd probably have opted for London but, as A was with me and will be taxi driver on the day, he chose that one. What would I do without him!

Of course, I've been researching these conditions and, although I have no training whatsoever and therefore should not tell an expert he's looking the wrong way, I think it seems more likely to be lupus - certainly fits better with some of the non-skin issues I've had in recent years. If it does turn out to be porphyria (and there are 7 to choose from), please can it be one of those that doesn't have liver involvement. Me, no booze ever again?! Yeah, right.