Sun Sensitivity

[Figaro]

I just found out that the newest medication I am on about doubled my sun sensitivity. Now even with SPF 60, I am burning after about an hour in the sun.

Does anyone have any idea how much of a problem is this going to be at WDW? I use a wheelchair, but it is kind of obvious that I am going to have to make even more of a point to stay out of the sun this October.

 

[SueM in MN]

Here's some soothing Pixie Dust for you.

First thing I can think of is that you need a GAC that allows you to wait out of the sun. Most of the lines are shaded, but at least the GAC would help some.
Second: one of the places you will burn (if not covered up) is your thighs, since they are right there pointed toward the sun while you are in your wheelchair. You can get a nasty burn on the thighs.
Third: There are some clothing companies that make lightweight sun protective clothing. You can get the same effect wearing tightly woven cloth, like denim, but you might die of heat stroke that way.

Here is one company called Sun Solutions and another one called Solumbra.

 

[Figaro]

Thanks for the information, Sue!

At least I don't have to worry about my thighs burning, since I wear long sundresses that go to my ankles. But I will need to be extra careful about my feet, since I am one of the few people who can wear totally impractical sandals to WDW since they don't get much use(smile).

 

[Kermit]

Also be sure that you're applying the sunscreen heavily enough. I've read several places that the vast majority of people don't use enough sunscreen and thus don't get the SPF promised on the bottle. The "average" adult should use 1 ounce (about enough to fill a shot glass) for coverage in shorts and a shirt, more in a swimsuit. It should be so thick that if you put one more drop on it wouldn't rub into your skin. It is expensive to put sunscreen on this way, since most bottles are only about 8 ounces, but it works.

 

[SueM in MN]

kermit, your post made me think of something else I have read about sunscreen:
Most people put it on right before they go outside or while they are already out in the sun. You should actually apply it 1/2 hour before you go out in the sun to allow it to absorb into the skin before you go out.

 

[cupcake]

RIT (the dye people) also makes a product for washing your clothes. It makes them have a high SPF, so if you can find it in your area, it may be more cost effective than the special SPF type clothing. Also remember to wear a wide-brimmed hat. I feel for you, I have photosensitivity from my diabetes med (glucophage, it's not common so go figure, but overall it still is the best choice for me). I get itchy red blotches as opposed to an actual burn, my dr says it's like sun poisoning. I have found that being on the water in a boat is not good regardless of what I do (block, clothing, etc.). I think it's the reflection. If you have any particularly sensitive areas, Dermablend makes makeup (both for the face and for the body) that affords the same protection as zinc oxide but doesn't look weird. Obviously not a good idea for your whole body, but a lifesaver for small sensitive parts when you know you will be outside a lot (the backs of my hands are a particular problem for me). We also plan our days to minimize the amount we are outside during peak sun hours (late morning/early afternoon).

The comment about making sure that you put on enough block (and reapply) is also right on. My dr says that most people don't get the full coverage bc they don't put on enough block. I have ordered from drugstore.com bc the selection of suitably high blocks here in the midwest is poor. I like the spray-on type for reapplication during the day, it doesn't tend to get gooky.

Finally, I have found that slathering on fresh aloe at night really helps me, it is the only thing that does anything with the redness/itch. To pass on a feel good story, we were in a drugstore in Hawaii trying to buy yet another cream (this was after the a boat trip, big mistake, the 60 SPF that we had such high hopes for didn't do the trick). The pharmacist sent us to a nursery where we showed them my arms. They gave us an aloe plant and just refused to accept any payment. It was like a miracle, the next day it was so much better.

We vampires have to stick together! I know I said this before but ... what a great board! I have never met anyone before with photosensitivity.

Oh, remember that SPF simply extends the time that you can be out in the sun w/o burning. With photosensitivity from meds, you may not be able to tolerate any sun, so X times nothing is still nothing. I learned this the hard way, I still liberally use sunblock but I don't rely on it exclusively.

Cupcake

 

[diseyore]

My 16 yr old has this problem too. We read in the Lupus Book to use Tagament and an antihistamine. This creates additional blocker. She does not have the terrible rash and does not get as sick. We still can't go to the water parks and try to stay in shade as much as possible. We will be requesting a GAC this time to help stay in the shade plus with fibromyalgia it kills her to stand for long periods of time. People with disabilities don't try to run her over when she needs to sit down on the ground while waiting.

 

[SueM in MN]

Welcome to disABILITIES, diseyore.
I doubt that a 16 year old would agree to do this, no matter how much she hurts, but I have seen people using canes that have a small fold down seat attached to them that makes into sort of a portable stool. Since there are few lines that have anywhere to sit, it might help your DD to avoid getting run over.

 

[tink2dw]

I wish I had one one of those canes!! But I took a light Aluminum camp stool to wdw and used it to sit in lines with. It even went on rides with us!

 

[catsrule]

Also wear a hat with a wide rim all around it.

 

[nancycels]

hawaiin tropic makes a 70 block, not much better than 60, but some! (they sell it in the grocery store down near dis...Goodlings i think its called, or some version of that, last time i bought it it was in a grey/sliver bottle)(we've also purchased it in rite aid in PA)(also i think someone said u can order it from their website) plus I would think that your doctor/dermatologist might know of a prescription product with a higher block. I agree, u have to put it on thick, really rub it in and about 45 minutes before you go out in the sun. my daughter has no pigment, so u can imagine! good luck to all! may u have a sunburn free vacation!

 

[MHopkins2]

This may sound silly, but I learned the hard way last week: plan where you're going next before you go out in the sun! I burn very, very, very easily (no medical reason, other than BCPs, just ridiculously fairskinned and sensitive), and got cooked a couple times doing the "frantically looking at the map, where the heck are we?" dance. Also, definitely reapply your sunscreen every 4-5 hours or so - IMO, the bottles that say 8 or 12 hour protection are a crock, especially in the Florida heat.

 

[SueM in MN]

bumping up

 

[3kids4me]

Thanks for this thread. My daughter is currently on Doxycycline, and her doctor says she can easily get 2nd degree burns just from being in the sun for a short time. I'm really worried about our trip to DLR next week, but at least it's February and will probably be pants weather.

 

[cupcake]

I am a fan! Got it from Drugstore.com, it was hideously expensive but worked really well. It is a combination sunblock and physical block. It comes in "clear" (really a very fair skintone) and "tinted" (comes with a tube of pigment to shade it to match your skin). I used the "clear" as I am very fair. Coupled with the usual sun avoidance strategies I employ on vacation, this allowed me to return from WDW/Disney Cruise with NO RASH. This was a real change of pace for me, it's never happened before no matter what I did (I am photosensitive from medication and get sun poisoning very readily). It is like a heavy lotion so it is not as pleasant to use as a standard sunblock, but the physical protectants that make it heavier must be what make it work. Even if your daughter doesn't use it all over, I think it's worth trying in addition to regular sunblock on selected areas if she's extra sensitive in certain places. I am really bad on my lower arms, hands, and neck/chest (that's me in the summer with the high necked top!).

Have a great time!

Cupcake