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Discussion Starter #1
During my umpteen hours of surfing information on Lupus, I read somewhere that taking Plaquenil can reduce the effects of sunlight on Lupus sufferers.

Anyone know anything further about this? Is it true at all? Or just a myth?
 

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Hi Surferboy,

That is true, but as in all things there are exceptions to the rule (percentage lower thankfully).

Lesley
 

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I know I am not as sun sensitive as I was before starting Plaquenil - when I first got sick. I still have to be careful but my rashes are gone and I can take small doses of the sun (be out for a couple hours with sunblock and sensible clothing) without them coming back. If I am out more than that I start feeling really bad and will get a butterfly rash for several days/weeks. I am not sure if it is the Plaquenil or just that I am better, not in a flare now or a combination of both. All I do know is that I avoid the sun because I don't want to trigger a flare starting again. The sun isn't something to play with.

I should say I have only been diagnosed with Sjogren's Syndrome and possible Lupus at this point but I do have many symptoms and positive ANA, SSA, lupus anticoagulant, elevated ESR, (just not ds-DNA or SM antibodies and no major organ involvement thankfully).

Nancy
 

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Hi,

It can sometimes work the other way too. On the list of possible side effects is photosensitivity, so for some it will worsen symptoms. I'm certainly more sun sensitive than prior to treatment , but whether this is drug related or would have happened anyway I can't say.

Cheers,

X C X
 

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It it generally somewhat reduces photosensitivity but this is only a small additional side help, sorry to say. In a few people it has the effect of increasing photosensitivity. Both these effects are well documented.
Avoidance and protection remain the most important ways of reducing UV exposure.
:(
Clare
 

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Discussion Starter #6
Sigh :rolleyes: So, taking the medication could be a bit of a gamble as if you have no sun sensitivity before you could do after!!!

I'm not sure if I am or am not sun sensitive. I mean, a few weeks ago I was in Devon, went surfing, sat on the beach bare chested (trust me, not a pleasant sight :blush::hehe: ), went walking around several towns in the sun... and nothing. I was fine for the entire week!

But then a few days ago, I was in the sun walking to and from work, and BAM all the aches and pains returned. But again, not sure if this was cuz of the Lupus or just a summer flu (had sore red throat and high temp).

Bloomin' 'eck, this Lupus stuff is confusing :rolleyes::rolleyes:
 

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Hi,

yup, it is confusing, but after a while you will get to know your body and learn how to modify your life accordingly, so hang in there.

Plaquenil does much more than affect sunsensitivity, it helps prevent autoantibody production, lowers the bad cholesterol, has slight blood thinning properties and is a mild antiinflamatory. It is definately a wonder drug that can not only treat existing disease but help prevent worsening. I'd highly reccoment it.

By the was, sun sensitivity comes in many forms. Many people don't get a rash. I could measure how much sun I'd had my how much proteinuria I had the next day, so it saw affecting my renal functin - not a good thing. Also you are not allone in reacting differently on different days. You still need to avoid the sun.

When you surf do you wear a wet suit? This will offer you great UV protection. Alternatively a "rashy" is an australian invention - a lycra swimsuit that looks like a light weight wet suit - high neckline, long sleves and long trousers/tights. These have a SPF of 80+ and are highly appropriate for surfing in summer.Then in is just your hands and face you need to protect and a good sunscreen can do that if aplyed frequently.

X C X
 

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Plaquenil has greatly reduced my sun sensitivity. I think more people experience an improvement in sun sensitivity than a worsening in their sun sensitivity, but that's just my view from what I've read/heard from people in online exchange of information (& my own personal experience).
 

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Discussion Starter #9
cath;515383 said:
When you surf do you wear a wet suit? This will offer you great UV protection. Alternatively a "rashy" is an australian invention - a lycra swimsuit that looks like a light weight wet suit - high neckline, long sleves and long trousers/tights. These have a SPF of 80+ and are highly appropriate for surfing in summer.Then in is just your hands and face you need to protect and a good sunscreen can do that if aplyed frequently.

X C X

Cath, right now I wana come and give you a big wet sloppy kiss on the cheek... no, make that BOTH cheeks :-X & :-X
 

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I stopped trying to figure this thing out. I just take the extra precautions and run with it, whether i need them or not.
Haven't had any major flares yes, Lord willing.
 

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It definitely helped my sunsensitivity but I was way over the top with it, so I still have to be incredibly careful.

Good on you Cath re the Aussie invented rashy :rotfl:see we are good when it comes to sun protection here, we have to be :hehe:

love
Lily
 
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