OK so I was diagnosed with Lupus/Hughes and sjorgens, perhaps I am in denial but i still feel that my symptoms are so off the scale and I often wonder if it is Porphyria - Does anyone know how to test for this or have any experience.
I ask as being in the sun for just a minute brings on major symptoms and I am so unsure if that is lupus as I know with Porphyria sun can trigger that in seconds
Any help would be appreciated and I will ask my consultant next time I see him
britishlivertrust.org.uk/li...
Generally the urine will become very dark - but not always. They are very rare though.
Thank you,
Its just so strange I am trying to make sense of my symptoms, I had my car Derma guarded which gives a total 100% UV block but I got real sick after the journey for about 1/2 hour. So I seem to be actually reacting to the actual sun and not the just the UV - Went very Neurological/spaced/weak.......So scary 
Hi riannabri ,
There are a number of people with lupus who unfortunately react to visible light as well as UV. You can read a bit more about this in our blog article at lupusuk.org.uk/coping-with-...
