Surferboy you seem to have all the luck!
I wonder where this fellow buys his Christmas crackers.
Photosensitivity is so common in LE that one of the world's leading authorities, Dr Sondheimer, says that all SLE patients need to be warned of the risks and advised what precautions to take.
I have had a really good read up and it seems that the reports of worsening systemic symptoms such as fatigue, aches and pains, are very common but for ethical reasons it is not possible to conduct a trial on humans and animals can't be used for what are subjective, unmeasurable symptoms.
I know that I have read accounts of increased proteinuria after UV exposure but maybe they are anecdotal , which doesn't mean to say they aren't true of course just that the information hasn't been formally collected. Some sorts of mice given irradiated DNA develop lupus like illness.
Anyway, regardless of what is known or not known or not clear about a very complicated subject, and however variable individuals reactions might be, the fact remains that the standard advice for SLE patients is to be careful and UV avoidance is the very first line of therapy for people with lupus skin problems.
This doctor can't possibly know enough about your case or how photosensitive you are or future prognosis and he is very unlikely to have sufficiently detailed up to date information about the highly specialised area of skin lupus to make any pronouncements.
The other side of the coin is that it is impossible to say that people's reports of feeling worse are not true. It seems generally ackowledged that it does happen.
People often report worsening of symptoms during the winter months presumably after summer sun exposure. The skin itself doesn't always immediately react even in photoprovocative studies - the reaction might only be obvious a couple of weeks later and the absence of long term follow up means that those few who did not show signs of reaction might do so after the end of the study period.
Also it seems that some people fail to make a connection between UV exposure and worsening symptoms so it isn't reported.
I doubt very much that it's true to say that skin reactions will inevitably proceed systemic ones.
On top of all that, it is truly shocking to suggest that people with LE taking reasonable precautions might be paranoid, especially having just diagnosed discoid lupus. He's a psychiatrist too ? These minimum precautions are those recommended these days just to reduce the risk of skin cancer.
Darker skin is of course reckoned less photosensitive in general terms but that doesn't guarantee against skin lupus. Is 'less likely' good enough ? Not in this situation, in my view. It might give some reassurance, as do all degrees of unlikelihood or improbability, but to dismiss it completely is not right.
All categoric statements about lupus are suspect- there's a reason for the saying that the only sure thing about lupus is its unpredictability, to which one might add individual variability.
Anybody taking even a casual look at the pictures of advanced discoid with permanent scarring and loss of pigmentation would do all they could to avoid risking such disfigurement with its profound pyscho-social implications. It's bad enough for any skin type, but even more dramatic on darker skins.
I don't mean to scare anybody, especially you surferboy as you seem to do a good job without assistance
but I am sure that with good luck, good management, that is, specialist doctoring with timely effective treatment, as well as your own coping and adaptation skills you will be OK.
I hope you will soon find the good doctors.
All the best
Clare
