Lupus & Sun

[JennyDrake]

Much to my surprise I was diagnosed with Lupus just under a year ago. I'm 54 years young reasonably fit and quite active. I go to The Mouse 4x/year (work takes me down and then I stay and play with Mickey) and 2 weeks ago I was slammed by a systemic flare while at WDW. I take plaquenil and mobic daily. My joints started hurting all of a sudden and I hit a wall of flu level fatigue. Anyone else had this happen? And what can I do to head it off next time I'm there? I live in the south in a house wo a/c so I'm well acclimated to heat. I had NO idea (until I talked to my doctor) that increased sun exposure could cause this.

 

[mamabunny]

Yeah, I have PMLE, (PolyMorphic Light Eruptions) which sometimes accompanies or is associated with Lupus.

In addition to the crushing fatigue and flu-like symptoms, I get the "fun" side effect where any skin exposed to the sun for more than about 10 to 15 minutes max will begin to blister. I won't go into details, but it gets gnarly real fast. My PMLE had to be diagnosed by biopsies that were taken from multiple locations after I had intentionally been exposed to the sun, and then began to blister.

Heat will make you feel worse if your sun exposure is kicking up, and I have no idea why. So, in addition to the common sense stuff you probably already know, try to stay as cool as possible.

Basically, you will become Princess of the Mole People (because *I* am Queen of the Mole People, cuz I got here first! LOL)

Dress in light colors - but cover *everything*. Remember that UV light is now your enemy - so any vehicle you travel in should ideally have UV tint on the windows. At home, you can probably get away with sheer curtains over open windows to help cut the amount of UV light bouncing around inside the house, but every little bit helps. Remember that places like under your chin can even get reflected UV light, and can thereby cause symptoms.

You can find UV protective sleeves and clothing all over the Internet - on Amazon alone there is an amazing selection. I have a harder time with my socks than anything; I am so used to wearing liners and I hate socks, but at WDW, I wear them, because my feet and ankles get extra exposure during my time on my personal mobility device.

You don't want sunscreen - you need sunBLOCK. You can go to a dermatologist and get fancy prescription stuff, but a good SPF 50 should be sufficient if you are careful about keeping it applied on what little exposed skin you will have. I use only "ocean friendly" or "reef safe" sunblock. Don't try to rely solely on sunblock - I learned that the hard way!

Cooling towels, big floppy hats, a parasol (I have a favorite I purchased at the China Pavilion in World Showcase years ago that I carry on every trip) long sleeves, long pants, gloves, socks and a deep abiding joy when the sun drops close to the horizon all await *you* on your next trip to WDW! Welcome to Mole Central!

 

[Mrsjvb]

wow. they still Prescribe Plaquenil?! I was on it maybe 3 weeks before I had to come off it due to the side affects.

any who. UV clothing. floppy sun hat. I use one that you dip in cold water and wring out and it keeps your head about 20 degrees cooler than the surrounding temp. a godsend during florida summers( working on the 6th straight week of heat indexes of 98 and higher ) I also have those neck bands that do the same thing when hats are not appropriate or practical.

also split your day up.. go at rope drop til about noonish. go back to the resort for a mid bay break then return to the parks about 4-5 for the evening.

 

[Starwind]

wow. they still Prescribe Plaquenil?! I was on it maybe 3 weeks before I had to come off it due to the side affects.

any who. UV clothing. floppy sun hat. I use one that you dip in cold water and wring out and it keeps your head about 20 degrees cooler than the surrounding temp. a godsend during florida summers( working on the 6th straight week of heat indexes of 98 and higher ) I also have those neck bands that do the same thing when hats are not appropriate or practical.

also split your day up.. go at rope drop til about noonish. go back to the resort for a mid bay break then return to the parks about 4-5 for the evening.

Yep, Plaquenil is still a standard. Its still a first line DMARD for RA for example.

OP, as others have noted, sun protective clothing is your friend. I actually find I am cooler and more comfortable in it than without it. LOng pants, long sleeves, wide brim hat, socks.

Eclpise ( https://eclipseglove.com/ ) makes some great gloves and sleeves. I find them VERY cool to wear -- cooler than NOT wearing them ! I have some I wear at home e.g. when driving especially for longer drives. And I bring some when I do WDW.

I love Coolibar clothes [ https://www.coolibar.com/ ].

Both Coolibar and Eclipse also have some nice coverups that you can layer over your normal clothes. I find doing sun protective clothing in layers this way can be helpful and cut down on the cost as I can wear normal clothes and then layer with a coverup that is sun prrotective. So e.g. a sun protective hoodie. The lightweight fabric is cool and protective and it is easy to take off indoors if i want [but to be honest i usually just leave it on].

So at WDW I have a mix of normal clothes layered with a sun protective coverup and outright sun protective clothes.

For swimming, I wear a normal one piece swimsuit, but in the daytime over top of that I have a long sleeve rash guard [I have a few different styles from simple tshirt styles from LLBean, Lands End, and Coolibar, to a great one from Coolibar that is a tunic style with a hood] and long swim tights. I also have sun protective swim socks and swim gloves. I always wear swim/water shoes, no bare feet.

One thing we strategize at the parks is for the most part we take advatage of the park being open late -- we visit in winter and so it is DARK when it is open late So something like MVMCP is wonderful -- most of it is at night ! No sun ! We've done WDW in September and will NEVER do it again then or any time warmer, it is just way too much heat and sun for us. We don't completely avoid the sun, but a late morning atart and then stay until park close works for us. We have done rope drop then take a pause mid day then back through till park close, too. I've done open to close, but unless it is a short park day those are just too long a day for me anymore.

SW

 

[DisneyOma]

I've been avoiding the sun at WDW in August for years. Many other posters have given the standard advice of clothing/sunscreen so I won't repeat that. My planning strategy is rope drop until about 10, either back to the room to nap/rest until evening or a series of indoor attractions and a sit down meal. Then it's back to the parks after 4 PM, until the parks close. This gets me minimal sun exposure. And the great thing about WDW is that most of the queues have overhead cover or are indoors.

 

[hunterjumperluv]

Probably echoing a lot of posts but, as someone who works outdoors with a UV allergy and a chronic disease that often goes hand in hand with lupus, I would strongly suggest a sun shirt, with a high UPF. I have a few that I can recommend personally, PM me if you would like them.

Also, personally I find that chemical sunblock/sunscreen just doesn’t do the trick. Try to go for a physical sunblock, think a zinc oxide type of sunscreen which creates a physical barrier vs a chemical one. Before you go thinking I’m suggesting the big white smears on your face of days past, there are quite a few companies that make powder brush on style zinc oxide sunscreen and it is honestly the only kind that I find works at all for me. (Added bonus, easy dry application).

Good luck!!

 

[Dispro1]

Much to my surprise I was diagnosed with Lupus just under a year ago. I'm 54 years young reasonably fit and quite active. I go to The Mouse 4x/year (work takes me down and then I stay and play with Mickey) and 2 weeks ago I was slammed by a systemic flare while at WDW. I take plaquenil and mobic daily. My joints started hurting all of a sudden and I hit a wall of flu level fatigue. Anyone else had this happen? And what can I do to head it off next time I'm there? I live in the south in a house wo a/c so I'm well acclimated to heat. I had NO idea (until I talked to my doctor) that increased sun exposure could cause this.

Much to my surprise I was diagnosed with Lupus just under a year ago. I'm 54 years young reasonably fit and quite active. I go to The Mouse 4x/year (work takes me down and then I stay and play with Mickey) and 2 weeks ago I was slammed by a systemic flare while at WDW. I take plaquenil and mobic daily. My joints started hurting all of a sudden and I hit a wall of flu level fatigue. Anyone else had this happen? And what can I do to head it off next time I'm there? I live in the south in a house wo a/c so I'm well acclimated to heat. I had NO idea (until I talked to my doctor) that increased sun exposure could cause this.

Hi! I know I’m replying to a really old post, but I’m just wondering how you’re doing and if you’ve figured out how to deal with the sun issue since there are different levels of sun sensitivity. My rheumatologist just told me I might have lupus and to avoid direct sunlight, so I’m trying to figure out how this is all going to work since we visit Disney 4+ times a year like you do! I know you haven’t had much chance to try things out at the parks because of the pandemic, but I’m hoping we’ll all be able to go back in the spring !