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Discussion Starter · #1 ·
Well, as you all know I saw a rhumy today.

And to cut a long story short, when I asked him about photosensitivity he pretty much said that he doubts very much if the sun would have an effect on me. His reasons were:

a) If the sun did have an effect I would notice straight away as my skin would break into a rash.
b) I'm quite dark skinned so the skin won't be as sensitive to the sun.

I asked if it was possible for the sun to just trigger a joint and pain flare - but he was quite certain that prior to the pain factor I would notice skin rashes!

He did however say that if I was paranoid I could always slap on some sun block.

Oh I do hope he is right.......... But still going to be careful :)
 

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The vortex of insanity!
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I have been known to get ill from sun exposure without getting a burn or a rash, so I would definitely put on some sunblock. However I am pretty fair skinned (half Scottish, half Hungarian, leaning towards the Hungarian skin tone but still a redhead! :p) Especially if you notice a correlation between being in the sun and not feeling well (regardless of rash) be sure to wear sunblock, it's good for you anyway!
 

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Inky
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Well, I don't get a rash but too much sun seems to make me very tired but not more ill. A little is OK. My rheumy says all "lupies" should wear sunblock and avoid the sun, regardless. Not everyone with lupus gets the malar rash, I am one of those who don't.

However am not sure if this helps.

Basically for a lot of things we are going through the main reason is that we have lupus. For some the sun makes it worse, for others like me it doesn't really! I have terrible ankle and wrist pain today. Done nothing different at all yesterday or in fact for days, just suddenly they get inflamed and hurt like billy'o. So I just say to myself... oh that's what lupus has decided to get at today! Of course on this basis I am expecting it to go away again ;) it usually does eventually and if it doesn't it will be back to the docs.

Sara
 

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Hello!

I rarely get rashes from the sun, but I begin to feel heavy and achy within about 15 minutes of exposure. I have a definite increase in joint pain and other symptoms for a few days following time in the sun. In fact, my first experience with joint pain began the morning after getting a mild sunburn.

Terri
 

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Hi Surfer boy!

To throw my experience in too.. too much sun makes me feel like the flu...joint pain, fever, etc. I think only twice Ive gotten a rash from sun exposure and that was after like a full 8 hours at the beach.. and after a couple of days. If you notice too much sun affects you, then theres a good chance. I know I have a higher tolerance than most when it comes to sun time, but everyone is different!

Love and :luck:,

Chal
 

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Hi,

If that's what he said then he disagrees with a very large part of the top lupus rheumies who say that the sun can provoke inflammation in lupus patients (not just of joints but also in internal organs) and lead to far more serious problems.

However, knowing you (just a little) I agree that you should not be paranoid. Careful is fine :) Just don't go round showing your chest off to everyone while surfing :rotfl:

Katharine
 

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For goodness sake:rolleyes:

I think we need a volunteer to make some lupus information flyers and drop them off in certain, dwellings where those GP's and Rhumatologists dwell.

In fact Im not sure how good an idea it would be to write to St Thomas Hospital in London for a definitive answer and ask them to update every GP or Rhumie via an email database......

If the sun plays a major factor with some then they need to know it.

:mad:
 

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Inky
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Nicky

Could not agree more. I see my rheumy in three weeks and am definitely going to mention this to him. (he's in the NW but every little nudge will help). It is worrying that so many rheumies have differing opinions. I was not suprised when my GP did not understand this (he once said the sun won't be a problem if you don't get a face rash!) but a rheumy should know better.

Sara
x
 

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Surferboy you seem to have all the luck! :eek: 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
 

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i dont know whether to laugh or cry........that is such a spurious claim to make. perhaps he is confused!!!!

i can certainly attest that my 4 hours in the sun (using factor 12) resulted in a lot of pain and extreme fatigue to the point of drowsiness. i am still feeling the after effects over a week later..............?????? no rashes as a precursor either.

i have sle and am also afro-carribean with a light skinned complexion. i used to be able to tolerate the sun but not this time.....and was not this bad before....

i say be cautious as opposed to paranoid!!!!!!!!!
 

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Sara,

Your quote,
but every little nudge will help). ....I absolutely think that all those nudges accumulate into a big positive.

I just which I could shove! instead of nudge with some:wink2:.

Nx
 

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I'm one of those that did a self experiment with protein spilling from kidneys and sun exposure. I tested prior to (nil or trace result) and after sun exposure (by sun exposure I mean still wearing hat/sunscreen etc.). Result: protein varied between 2+ and rose to 4+ :eek: sometimes. I made sure that it wasn't due to exertion because that can cause a little protein spillage in even a non lupie. But when we are talking 4+ with no exertion I think that proved my point! Something my doc was not terribly surprised by I might add ;) I'm the extreme of course, but this guys sweeping statement demonstrates his ignorance on the subject.

Caution and being sensible is enough for most lupies - some are over the top in their reactions and it doesn't always mean a rash prior to other symptoms.

love
Lily
 

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Surferboy, I think that you better get yourself a different Rheumy, as this one is giving you bad advice, and bad advice can add up to deadly consequences. The
sun is you enemy,period. Knowledge is power, so read up on your facts, at the front of this site, and you will find out for your self. You certainly don't want to end up any mor worse off than you are? do you? Be well.
 

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Discussion Starter · #14 ·
Well, things just go from ridiculous to... ... ... well, I don't know where else they can go from ridiculous!!

This morning I had an appt with my GP. And guess what he said when I asked him to prescribe me Sunsense??? "Why do you want sunscreen?" I explained my reason and he said not to read too much into sun sensitivity and how he doubts very much the sun has an effect on my Lupus. He did however backtrack a little and say "it shouldnt have an effect unless you sit in the sun for a few hours......"

In the end i did manage to get him to prescribe it for me!
 

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I am with Chal on this.

I did not want to believe the sun was a problem because that meant restricting my life style in the summer, and let's face it, in the uk we have precious little good weather, so when it is here we like to go out in it.

I wear a floppy brimmed hat and sun block when i am working and will start early and have a long lunch to return avoiding 11.00 - 13.00hrs outside.

If i get over confident and go without proper precautions I get symptoms very similar to flu - muscle / joint aches, low grade temp. dragging tiredness. I do not need this because it can last a long time, so I am cautious.

I only get a rash, but it is quite impressive, when i forget sun block and long sleeves.

It is great if you are not affected and i think only time will tell if you keep a little note of when you are at your worst and see if any patterns emerge.

Can be difficult to get the right balance between monitoring and focussing on illness. So it is useful to note when you feel at your very best too.
 

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Sun theory thrown out of window

I know the sun definately affects me. I feel like a clockwork toy winding down, getting slower and slower and weaker and weaker when I am in the sun. The next day I ache all over and feel exhausted. I think a lot of lupies are affected by the sun, bit I do not come out in a rash unless I have spent hours in the heavy sun, but there again I don't have stupid tatooed on my forehead! :lol:
Take care Rosie
 
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