Could I have possibly gotten burned doing this!?!?

[mutantfrog]

OK.
Question regarding doxycycline and sun exposure. I know there have been a few of these...

I took doxy for a long time when I was a teenager and early 20's. Never was too much more sensitive to the sun while on it (same dose I'm on now).

Took a break because of some allergy confusion...and now have been back on for about 2-3mo.

I do put on sunscreen on my arms (usually some kind of Coppertone, SPF 50), chest, etc now that it's warm outside and I'm wearing tank tops.

I didn't put any on Sunday because I was literally going from my house to the car (15sec), traveling in the car 20min, and then again walking from the car to the studio (15sec). That was the total sun exposure.

I somehow got burned really badly on parts of my arm - like the shoulder cap, then a big gap, and the lower part of my arm (right above the elbow) and upper part of my forearm. Only on the left side - so I am assuming it's from sun while I was in the car?? Except that i thought I was protected?? Now I'm just really confused. Windows were up the whole ride.

So here are the questions:

-I was told (by a derm) that car windows protect from UV. Is this true?
-has anyone else burned this intensely from such a minimal sun exposure??? I mean, either it was through the window somehow driving (in which case, 20min isn't too minimal I guess) or the few seconds walking to and from the car total that day.

Sorry I'm just trying to figure out if somehow I'm indeed not protected in the car, or if the exposure necessary to burn now while on doxy is really that small. Wasn't an issue for me before, so i was really taken by surprise. I thought I had like a cellulitis type infection at first - not realizing it was just sunburn.

Would appreciate any advice or experiences...
Thanks!

[Melissa W]

Hi Mutantfrog,
I'm sorry this happened to you!
I did have a burn while I was protected with sunblock and I think it was due to the doxy making me more sensitive to the sun. So now I am still taking doxy but I am ever more vigilant with making sure I reapply often if I am exposed to the sun and making sure (which could have been the problem with me) that I get every area of my body that is exposed to the sun covered with sunblock.

As for as car windows protecting from UV they should protect from UVB (the type that causes sunburn) but not UVA which is just as bad IMO.

In the majority of modern cars, the windshield is built of laminated glass that blocks all of UVB and the vast majority of UVA. However, the side and rear windows are usually made from non-laminated glass and let much of UVA through. Clear non-laminated car windows allow up to 60-70% of UVA to penetrate. Tinting reduces UVA penetration to about 15-30%, a much better but still significant level.

So it looks like your derm was only partly correct.

Another question to consider- are you sure it is sunburn? I remember another separate incident that at first I thought was sunburn but then realized it couldn't be and I went to my derm and he diagnosed PLE (Polymorphic Light Eruption).

Though most likely what you are experiencing is sunburn because doxy can make you ultra sensitive to the sun. It seems that rosaceans are predisposed to being extra sensitive anyway and then add doxy and you have a greater likelihood than the general population that is on doxy for a different reason.

Hope you feel better soon!

Best,
Melissa

[mutantfrog]

O.M.G.
Melissa W thank you so much for the PLE suggestion. I googled it and the image looks EXACTLY like what I have! (http://dermnetnz.org/reactions/pmle.html). Esp the one on the far right of that page. I've been chilled and nauseated off and on since Sunday...a general low grade 'ick' going on. I assumed it was partly from the heat coming off of the 'burn'. Really really unusual for me.

It started off looking almost like hives (red background with white circular blobs) but was flat...I put a steroid cream on it stopped itching, but when it started up a few hours later it was more like a collection of red flushed skin (like a sunburn) but then also had a lot little red bumps. Since then there's been some itching (not too bad) but more of a burning sensation. And definitely a lot of 'background redness' in the area along with sensitivity, and the "finger impression test" some mild swelling and such. But then some splotchy areas that were just red 'dots' of various sizes in between the redder areas.

I'd been thinking infection? some new presentation of hives? poison oak?? contact dermatitis?? But then what did I touch only in those areas...? And realized it was the side that gets hit the most by the sun in the car which is why I was leaning towards sunburn. My left cheek is also always worse than my right - it's fine right now (I always wear a hat outside the house. Always.) but it seriously makes me think that sun exposure via the car is a bigger factor. I'd always thought I was 'protected' to a larger extent there. And sun has never been a huge trigger for me in the past.

I'm definitely going to contact my doctor tomorrow and ask about this (and esp make sure that it is indeed not an infection - though I'm pretty sure it's not better safe than sorry). I mean either way - I still need to protect better, I had no idea about the car windows. If I am becoming more sensitive to the sun, then that difference in % on the car windows and even a few min of unprotected (sunscreen or clothes) skin may make a huge difference. I'm a little annoyed that I was assured that 'nothing harmful' was reaching me in the car. But again - my bad - I should have been more thorough and not just trusted the first doctor's say so.

It wouldn't make me stop the doxy - it has been SO HELPFUL for the rosacea on my face - but like I said, then I need to do my part and be more aware of just how much more sensitive it may make my skin this go around with it.

I think I was more surprised and perplexed than anything else, thinking that I was already doing enough of the right things.

Thanks so much for the info, Melissa. And to anyone else who is having/had a similar experience - would welcome the info. I will post back in a few days to update.

**Melissa - I saw a few drugs listed as 'treatments' on that page from dermnetnz...do you have any experience with any of those? I mean clearly it sounds like the best thing is better sun protocol but I am just curious. I hadn't really heard of most of them.

[Melissa W]

You're welcome Mutantfrog.

For treatment I just cover up as best I can. I had an outbreak during our cycling vacation a few weeks ago and I just applied a topical steroid (PLE doesn't usually affect the face thankfully) for a few days and kept the area covered from the sun as best as I could. That proved to be a bit more difficult as it was in the 90's (Farenheit) during our last week of vacation and we were still cycling every day but it is amazing how you adapt when you want to do something.

I see Heliocare is mentioned as an option and before I ever heard of or had PLE I had tried the Heliocare supplement. I haven't tried it for a few years (very expensive) but that is interesting that it can be used as a treatment/preventative(?) for PLE.


Good luck at your doctor's appt and don't worry if it turns out to be PLE. It sounds far worse than it really is. It is mainly just a nuisance and doesn't affect my life in any way.

Best,
Melissa

[mutantfrog]

Yup, it's PLE.

Have been very good with a topical steroid for a few days (to help it calm down). I also invested in a good, lightweight (BREATHABLE - it's been 95+ F around here the last 2 weeks) UV protected jacket for wearing in the car to avoid future exposure. I am usually pretty good about wearing SPF when exposing skin outside, but going to gym/coming right back from the gym or studio I absolutely cannot wear any kind of lotion like that. I am simply too darn sweaty. And if I put it on before going - I have slip issues in yoga class. But, the jacket seems to be working well for me so far. I also got a silly looking hat that covers more of my face while driving. Just because I didn't have any kind of PLE type outbreak on my face this time doesn't mean it won't happen in the future. I've just been keeping a towel in the car to cover my legs on the way to and from practice. All other times SPF isn't a problem

You're right Melissa, seems like a simple step to help with the PLE. I just needed to know what it was! Thanks so much for your help

[Melissa W]

You are so welcome mutantfrog.
I am sorry you have PLE too but it is totally manageable.

Though as we were cycling in 90+ F temperatures this weekend I kept having to tell myself it was no big deal covering up more than I usually would as I had another PLE reaction Friday due to being outside for a long time cycling. It is just so darn hot, know what I mean LOL.

But in the grand scheme of things it's no biggie...what I do wonder is why what is supposedly a rare condition seems to affect rosaceans more than the general population (just speculating here as I have no scientific data about how the rosacean population vs the general population is affected).

btw just in case this could be helpful to you - I buy spf 50+ clothing that is light to wear when cycling- I bought boys clothing from Lands End at the end of the season last summer when it was on sale. Boys activewear is much cheaper than women's cycling gear and I just bought in a larger size and it is great. They have lightweight jackets and tops at great prices that would work for you commuting in the car etc.

Best wishes,
Melissa

[mutantfrog]

I DEFINITELY know what you mean. I tend to be a heat flusher to begin with - so that first instinct is to try and keep my body as cool as possible to avoid causing a rosacea flush. Fortunately, I am finding with the doxy and singulair some heat flushes aren't the end of the world they used to be. I will still flush, but they don't cause crazy p&p most of the time afterwards. Just redness and some swelling which seems to subside fairly quickly.

The PLE however seems to take longer to go away once triggered.

Do you think it effects rosaceans more because we tend to take stuff that makes us light sensitive (like doxy)? Or possibly because to have rosacea we must be hypersensitive/have an autoimmune type issue to begin with? I don't know the answer either - but I would love to know someday...

Thank you SO MUCH for that tip about Lands End!!! I had to pay a premium for my jacket that I'm using now (from a local running shop). It was a painful amount. I'd love to find a few items to be able to keep one in the car, one in the house, etc (and to be able to rotate/wash more easily) without breaking the bank. I'd looked at a few other sites that I knew of (like Coolibar) but they don't appear to be light enough and also I don't think they really run small enough either. I'm pretty petite - 5'1, female...I have trouble fitting into XS petite from places like GAP. Good idea looking at the boys stuff! Thanks so much!!

I will def report back if I find any other additional sites...we PLE people in hot areas need to know ;)

[mutantfrog]

Wow ok so after all this drama -
ended up having to get a skin punch biopsy because the rash was still not responding well to oral Prednisone (though now my skin is flaring thanks to the prednisone). Waiting for the results...just was surprised that something that seemed so definitely PLE might not be at all. Will update when the results come in.

Very very weird.

[Melissa W]

Sorry to hear that it is still not resolved mutant
Sending good vibes your way!

Best,
Melissa

[mutantfrog]

Thanks for the support Melissa

Yeah so ANA came back negative, and I'm seeing a rheumatologist tomorrow for an interpretation of the biopsy. The biopsy showed some kind of connective tissue disorder; the derm's thoughts were lupus or possibly something like dermatomyositis. I'm not sure how these things can get confused with PLE - they look/sound totally different to me - but hey I'm not a doctor right??

I always grumble to myself about rosacea...but if it turns out that I never had rosacea but instead have had an autoimmune disorder...well it's scary I'd rather take rosacea. I swear to god I'll never complain about 'rosacea' again...

Anyways, will update tomorrow.

[mutantfrog]

Sorry for the delay.

So, it is definitely autoimmune. I'm doing a 2nd biopsy in September where a more specific test will be done to determine which AI is causing the problem. Doesn't appear to be systemic at this point, but some of these AI diseases start with just skin presentations and then develop and progress over time.

The rash ended up being all over my left arm/shoulder, both hands (knuckles, all of index fingers, and to the 1st joint past knuckle on middle finger), my upperchest and a teeny bit on my toes. Not just cherry red, but like a violet-y color of red. Did eventually develop some joint pain with those, but then again it was swollen and irritated so no clue if that was important.

For those interested, google images "gottrons sign" or "dermatomyositis"; gives an idea of the type of involvement...
The arm was a different type of rash, apparently, called "Livedo reticularis"
They all started (for the most part) looking like the pictures of PLE that Melissa linked, and then just...morphed.

Again, for those interested - this was a photoessay on dermatomyositis - I was stunned at how variable the different 'rash' presentations could be.

http://dermatology.cdlib.org/1502/reviews/photoessay/riderphotos.html

****warning: some of the photos on this site are a little graphic/extreme. Just FYI.

After 6 weeks of prednisone, I finally managed to taper off of that drug. It took awhile for sun protection to really kick in. I did have some flushing problems at the higher dose (and horrid sleep problems, and crazy intense mood swings after about day 10)...and after being on it for a little over 6 weeks, my back/core muscles are a bit weaker and I actually sprained my back about 4 days after stopping the drug. So now I'm trying to deal with that injury without going back on prednisone (for the inflammation). Fun stuff. I was never told that longer treatment (even at low-ish doses) could cause muscle weakness/atrophy, which was very irritating for me. i would never have pushed myself at the gym so soon had I known that. No, it wasn't listed on the handout of 'possible side effects' for prednisone.

Some interesting things I've learned:
-Sun and UV from sources like fluorescent/halogen lights are a HUGE HUGE problem for me. I never noticed any change in my 'rosacea' from these things before. But, having to cover up to such an extreme degree now for the autoimmune (including my face!) I have barely any red in my skin at all anymore. I am still on doxy, but have never had this kind of success with just doxy. i don't believe it's the prednisone, either, as my skin actually looks BETTER now that I'm off of the prednisone.

-I really can't tolerate sunscreens. I know there are so many threads on this board about people looking for sunscreens that 1. work 2. aren't toxic in some way 3. cosmetically elegant. I have tried...so many. And all they did was irritate my face. So, I sort of gave up on them. And have never been too good about sun protection on my body - not on a day to day, dashing out to my car and then back in the house - sort of thing. i'm thinking that i couldn't tell if sun/uv was an instigating factor for me because of the irritation from sunscreens. Good news, UV no longer getting to me, bad news, skin is angry because of topicals. Result - still very red angry skin either way. made it hard to tell what was going on...

-as a result of giving up on sunscreens, I did some serious investing in UPV rated clothing. Apparently 'regular' clothing isn't enough if you're really sensitive. Something like 50% of UV rays still get through regular cotton T-shirts. I was really surprised at that. Some recommendations:
--Buff headwear. Here is a product page on REI http://www.rei.com/product/736217. Check out the video of 'ways to wear your buff'. I actually wrap it up balaclava (sorry - face mask style) style when driving, outdoors, or in stores with unprotected fluorescent lights. It's not nearly as hot as you would think. In fact, outside, it actually helps me keep my temperature a little cooler. Yes, it looks a little odd. But, it is good for me so I'm trying to adjust to the idea ;) You can also go directly to their site for way more color and style choices than what's available on the REI site. I've been using the Buffs for skin protection, but also as hair accessories - definitely some fun colors/patterns available. They are a little pricey, but worth it in my opinion.
--went to Coolibar's site and ordered some sun gloves, jackets, and a rashguard (for in the pool) so that I can stay more covered and thus apply less sunscreen (usually just to my fingertips!). You can also find some sungloves with UPV ratings just on Amazon.
--and then I got a few hats again with sun protection built in, so that I can switch out and add a little style.

yes, it's all been expensive. But trying to help my autoimmune condition has REALLY helped my rosacea as well, which was a surprising side effect. Yes, i do think (and derm agrees) that I have rosacea as well as AI going on on my face...due to the P&P involvement. But with IPL and doxy, the P&P's had been pretty under control for the last few months. Extreme sun protection seems to have nipped the last bit of persistent angry redness.

I know lupus (and many other AI's that can present with a malar rash) and rosacea can sometimes be mis-diagnosed....so to those experiencing other symptoms besides just rosacea, I'd say insist on getting some other things checked too like bloodwork (ANA, etc) just in case. It could be like me, and be an AI disease that presents as ANA negative. But again - symptoms I thought were insignificant/not related ended up being hallmarks of another disease entirely.

Anyways, I know this has significantly diverged from the initial "I can't believe i got sunburned !!?!", but - I'm of the opinion that more information is better. Hopefully my experience will be helpful to others at some point