Hello. Some of you may remember that earlier I reported problems with my last rheumy appointment at the beginning of october when I was told out of the blue that I may be in remission and also might be developing drug induced lupus (on the basis of a sadly swollen red face from exposure to a bit of sunshine). I wasnt happy with this and got some really helpful advice from NRAS.
I arranged to see a dermatologist to clarify what was happening to my skin. He referred me to this marvellous unit at Ninewells Hospital that investigates light sensitivities of various kinds (including to lightbulbs). They did patch tests and shone light at me. ANyway the provisional verdict is that I do not have lupus. I may be allergic to some sunscreen and my usual Nivea Soft moisturiser especially when in contact with bright sunlight. My general condition is polymorphic light eruption.
I'm putting this up here because its strongly connected to getting anti-tnf treatment. Apparently they are not suitable - contraindicated for people with lupus. So if I had been diagnosed with lupus I would have been excluded from a lot of the biologic treatments - and the one I'm on - infliximab - has transformed my life.
Apparently the Dundee photobiology unit is about the only one in the UK. They are really thorough and incredibly helpful. I have one more day of test measurements to do and then that's it - I will get a report and so will my rheumy!
So there you are. A very positive experience of the NHS. Battle with the rheumy isnt over, but I'm much better informed now.