[ATS]

Hi all, i have quite a lot of experience with SLE but have one question I have never been able to figure out about the skin rashes.
when i was first diagnosed, i went into the sun at 15 years old and that night developed a rash down my legs (in a 2" thick strip down the top) and nothing anywhere else. Later, i got the same rash which itched insanely by the way, down my arms (which were the only part exposed at the time) and the same thickness across the top of my arm, and a thin strip down each finger almost like the veins of a leaf.
i hardly ever get rashes on my face and quite often not sun sensitive.

on a recent trip to florida my sunblock just wouldn't seem to stay on even though i applied it every hour. i got a tan. now i seem to be having problems with itchy cheeks but the 'rash' and redness appearance looks more like acne (which i never have). i didn't get a sunburn and have never had a sunburn (i have dark skin). does anyone have any suggestions of what it may be and if it is lupus related? it's SO hard to parse out what is SLE and what is not sometimes :worried:

i have hardly ever gotten rashes, especially in the past 10 years, so i am not experienced with how they can manifest.
from what i understood acne-like breakouts were not SLE related but it seems so coincidental i had to ask.

every since this has developed i've also been super tired, but i am not sure if that is from the stress of Delta airlines losing my luggage twice ! (lol) or from the sun exposure et al.
any suggestions, please let me know!

-a

 

[KarolH]

Hi there and welcome to the board.

I am not a good one with Lupus rashes as i do not have the malar rash that some folks talk about. I dont have a acne type rash either that your speaking of.

Mine is across my nose and on my cheeks but only slightly red and more of a flaky, itchy dry skin problem that I never had before. My Rheumy seems to think that taking Plaquenil has kept it at bay. Who knows for sure.

You should go to a dermatologist and get it checked out and take pictures of it when it flares up. This way you will have photos to show your doctor.

Hope to get to know you better.

 

[Katharine]

Hello again,

It is very difficult to say what is typical in lupus rashes other than the malar rash (and even that can vary quite a lot) as different people seem to have very different rashes and sun reactions. Even experienced dermatologists would need to actually see the person and the rash (not only photos) to be able to give an opinion.

It is also very difficult to describe rashes, even to doctors. As Karol said, you should always take photos of any rashes that you have so that you can show them to your rheumatologist and dermatologist (if you see one).

You may also need to make sure that you have the right type of sunblock (that blocks both UVA and UVB) and that you don't have a very old tube that would no longer be effective. Sometimes we just don't think to check and don't realise that we're actually putting ourselves at risk.

Katharine

 

[Clare.T]

Hello ATS

People with lupus are advised to behave as if they were photosensitive even if there are no signs of it. Photosensitivity can develop even after years and similarly it can lessen, from what I have read. It's good policy to follow the same guidelines as for skin cancer protection.

Getting a tan means that the skin has been aggressed & insufficently protected. Having a dark skin might mean you burn less easily but it doesn't mean you are more protected from developing lupus skin problems.
Using a sun screen is only a help, not a guarantee even if it is properly applied Protection needs to be used along with avoidance.
Some malar rashes are pretty sort of lumpy and bumpy but they rarely have pus type spots, if ever. Some of the medicines we take are said to increase photosensitivity

Take good care
Clare

 

[ATS]

thank you everyone! i know the rashes can be so confusing. i have gone through these periods almost thinking 'do i even really HAVE lupus or is it something else?!?!?' because often my ANA tests are normal and my skin rashes seem really raised and itchy and unlike many other people's. oh well, so goes the usual confusion of Lupus.
you know, for as smart as i think i am most of the time, it has NEVER occurred to me to take a picture of my rashes! thanks for the tip. Being in NYC seems to make it impossible for me to get in to see a doctor while the rash is still really 'there' in all it's terribly glory

xo a

 

[Clare.T]

Hello Amanda
I suggest having a check up if you haven't had one recently to make sure that the rash and the fatigue aren't signs of worsening disease or a flare that might need a bit of extra treatment. It is well known that rashes are never there when you want them to be :hehe: and most of us can't get to see a specialist doctor anytime we need, so it's not just because you are in NYC!

Did you used to go to the SLE Foundation support meetings at HSS? I went there a couple of times but found it very unsatisfactory. The talks are nearly always on the HSS website sooner or later. I think online support is much better because it is available whenever you want it, you can tap into a wide variety of experiences and build up friendly relationships with like minded people. Not to mention that you don't have to get yourself out or even dressed.


Clare

 

[ATS]

i did go to the HSS once and was bored. i felt like i didn't really fit in, if that makes sense? i went to one at St. Vincents (i think it's semi defunct now) and that was great because it was a variety of people that consistently went so it was good. i haven't found a suitable one since, have you?

i am going to go right home and take a picture of my red cheeks and call the rheumy ASAP. luckily she has email and i can do that too.

 

[onetay]

ATS,
I find that my leisions they are called by my rhuemy are two different types of rash. One is a pimple like thing and the other is a blister like one and the seem so stay close together. It does itch like crazy and when I itch it, it burns or stings a lot. I am not sure if that is what you have going on or not, but if it sound the same then yes that is sle lupus related. There is a cream that my dermy gives me which helps to stop the insane itching that happens with it and to sooth the burning feeling when I do itch it. I will send you a message with the name of it and you can ask your doctor about it if it sounds like the same rash that I get every year from april 1- Nov30 for the past 17 years. It can make you feel very tired or at least mine just wipes me out. I can be up for a couple of hours and feels like I have worked all day long if you know what I mean. I am not sure I helped you much but all I can do is speak from my own experiences with the leisions that I have and what happens with me to see if it sounds like what is going on with you. I hope this helped some and that you feel better soon.

 

[ATS]

tammy, YES! that sounds very similar. i have various nicknames from friends and the boyfriend about how itchy i get !!!! please let me know what the cream is. i am seeing my rheumy sometime soon (making the appointment via email with her now) and i will ask her about it.
i definitely get these itchy things.... way too often. thank you! xoxo

 

[teachmom67]

I would say that any rash following sun exposure is HIGHLY suspect to be lupus related even if you are dark skinned. I am VERY photo sensitive and can get a second degree sunburn in 15 minutes with sunblock on. It has been so hard for me to change my life to avoid the sun, but I have learned that it isn't just a risk of sunburn. The sun pretty much makes me feel like someone drained all of the blood out of my body so there is NO energy left. I joke with my kids that I'm a Vampire and can not go outside during the day. They have learned that I have to go to the pool later etc etc. I buy special sunscreen which buys me a little time. I did purchase some sun-protective clothing for situations where I feel I just can't avoid it. I even wear a hat occasionally even though I feel like I dork in one. I guess it just comes down to the fact that for me the costs of going in the sun are pretty ugly for me so even though I wish I could be out there, I know I can't so I've had to find ways to be in the shade or stay home because I miss out on more by trying to ignore the problem and do it anyway. It seems like every couple of years, I push it a little to far and wind up in the docs office blistered and sick asking for burn cream and then I pay the price for weeks or longer.

Amy

 

[ATS]

Hi Amy, thanks for the input. i emailed a picture of my rash to my rheumy this morning because i woke up with the rash again and she wrote back immediately that it was definitely an SLE rash because of the pattern on my face. so i am going to go see her in 2 weeks (unfortunately I can't go any earlier because of all these dramas at my office).
so anyway, where do you get sun protective clothing????

thanks!
amanda

 

[lazylegs]

Hi Amanda,

If you Google sunscreen clothing numerous companies will come up. Also most sporting goods stores also sell them.

I haven't tried it but others on the site have used a product made by Rit. It is a product you throw in with your laundry to sun guard your clothing.

Good luck with your appointment.

Take care,
Lazylegs