View Full Version : Sun lover covered up!

07-15-2003, 09:03 PM
:roll: Hi Everyone-
Last summer at this time I was tanning 3 days a week,
getting ready for vacation. Wanted to look tan, we live in Southern California after all I had to look the part.
My boyfriend and I enjoy riding motorcycles and were off to the Sturgis motorcycle rally in South Dakota.
It was alot of fun and the last year I was to ever be without long sleeves. Two weeks before the trip I broke out with a rash on my chest and scalp. It was dx'd as being a bacterial infection. I took 2000 mgr of antibiotics for a week , nothing happened. OK, now it's Fungus infection my Dr. said! I was on medication I didn't need.
Finally went to a skin specialist, after a biopsy it was found to be Lupus. I basically ran out of the Doc's office screaming and haven't been back since. It has gotten worse over the past year and I'm so afraid to go back to the Dr.!
My boyfriend is going to Sturgis again this year- but without me.

07-16-2003, 10:33 PM
:evil: [/b]OK, I feel like a heel. After reading some of your storys and the things that others are going through, mine is nothing..... What's a few skin lesions!
I'm a Hairstylist and have had back and shoulder pain - but didn''t think it was related. Now that I have read of the fibro thing, Joint pain ect. it makes sence why I feel the back burn more than the average person who stands on their feet all day in this business.
Vanity has alot to do with the way I feel... Not being able to show skin is really no comparison to not being able to get out of bed!
I've only had this condition for a year, with no meds.
(other than 2 weeks on Predisone) I want to keep a good outlook on my future with this condition,but I haven't been back to the Dr. since I found out I had it. I Guess a ANA test is in order?
Is there anyone who has the skin type really bad like I do?
Or is this just a symtom of something worse?

07-17-2003, 06:51 PM
I was wondering if anyone has had experience with the summer rash , I was diagnosed 2 years ago, they still ahve not firmly decided if I have RA along with the lupus. I had an RA factor of 220, nomal persons is 20. but it was not characteristic to have this rash with RA so they are pretty certian that I have a form of lupus. I have so many questions and didnt know where to turn , and it helps to hear from someone going through the same things.
I have a rash that appears on my arms after sun exposure, but is it typical for the rash to be itchy?? Mine is for several hours afterward then it calms down the longer I stay out of the sun. Anybody else experience this? Thanks :)

07-28-2003, 06:31 AM
Responding to the one with discoid lupus. My story is simular to the one who was tanning and the bike rider. I am a sun lover from the word go. My head was itching horribily and I would scratch it for relief. A co-worker asked why I had bald spots the size of silver dollars in the back of my head. I went to a dermotologist and after a biospy was dx with lupus.
I've learned to stay away from things that cause me stress. This included some people in my life. I stay out of the sun. At one point I was taking several kinds of vitamins and have had to reduce my intake on that. Thanks to Saysusie, I've learned what to eat and what to stay away from. And I started to work out. It helps build up bone density and of course muscles.
I am greatful for this website and the people who visit. This website is full of good info and people.

10-28-2005, 10:43 PM
I am fairly new here and have been trying to find information about Tumid Lupus. I have had skin lesions on my arms, back, chest and recently face. The biopsy (after 5 dermotologists) was positive for Tumid Lupus. I also recently had a postive ANA test.

I am told that TUMID Lupis is the form of lupus with the actual lesions as opposed to Discoid that is rash/skin.

I have been on Plaquinil for about 6 hears and for the first time in a good 6 years could actually wear a sleveless shirt. :D

I am told this is a very new and rare classification of Lupus and was wondering if anyone else had information on this?

I have checked the medical websites and there is not much information out there. I only know that is can become systemic at any point if it is not already. I would love to be able to talk to someone else with this condition.
I am awaiting further tests results to find out what else is affected.


10-29-2005, 04:16 AM
Welcome new ones and welcome to the world of ENJOYING avoiding the sun! Yes it takes time to reach that enjoyment, but it CAN come if you let it into your heart.

I too was ever in the sun, gardening, camping, hiking, generally loving the feel of the sun on my face. I've learned, through lupus and rosacea, that I cannot, CANNOT be outside without a hat. Sun or cloudy day. (There is just as much UV floating about on cloudy days, you know!)

A friend with lupus told me that all sun is cumulative, I didn't believe her at first, I've learned she is right. I feel so much better when I properly protect myself from the sun, even for a 2 minute walk to the mailbox.

At first it was a real &*%#@%^ and I HATED it. Then I decided to make it a trademark. Hence the moniker. It becomes fun when you have several hats - all with 4" brims and all opaque, no loose weave straw - and you switch them to match the mood or the day. Long sleeves? YES. With sunscreen underneath if it isn't sun-treated or thick cloth Slacks? Yes as well.

But always "crown your glory" with a hat. And your spirit is glorious - remember and be grateful.

Many hugs, many gentle hugs.

10-31-2005, 08:10 AM
Hi Lynzter: Your doctor's visit sounded a bit like mine. I, too, ran screaming out of his office when he gave me the diagnosis. However, neither he nor my family would allow me to hide from further tests and treatments. Like Hatlady said, you can still enjoy outdoor activities, you just need to take many precautions to protect yourself from the sun. WHen I was first diagnosed, I was an avid water-skier. I continued to do so, but in a wet suit and danksins for protection. I got all kinds of compliments on my brightly colored wet suites and danksins!!

Tumid lupus erythematosus (TLE) is a relatively rare and only recently recognized subset of chronic cutaneous lupus. It is a variant of discoid LE that has no epidermal changes. This is reflected in the clinical features as smooth surface without the scaling or hyperkeratosis. The lesions occur primarily in the deeper portions of the skin with rare epidermal changes. They are usually firm, sharply demarcated nodules lying beneath normal skin. The treatment is generally the same as for discoidal lupus.
Here is a good site with several links about Tumid Lupus:


I hope this has been helpful to you
Peace and Blessings

avec ailes
11-02-2005, 07:12 PM
I wish I could continue tests but left my job due to feeling so Ill off and on.
I went for a short ride up the country club bordering our property to pick up some hicory nuts with my mom. We went down and rented a golf cart for a couple hours .The air had quite a cold bite to it and it blew across my neck and even with a hood on, it was pretty nippy.
Within a couple days a very painful local rash on my stomach and a few spots on my face and legs that also itched broke out. They sometimes are weepy. Then my left wrist joint swelled terrible and I could hardly lift my arms for about 3 days then it seemed to get better. Wrist felt better, could lift my arms again ect...

Has anyone else had a problem after exposure to cold like that?
With me it is always after a temp extream that I am not used to, like the first cold snap of the year.

I always get areas of breakout and it moves around, the rashes are getting more painful as well as itchy.

avec ailes
11-02-2005, 07:15 PM
I forgot to say, I am the same lynster LOL but My server changed thier e-mail to different ending, I forgot my password, and when I tried to send for a new one it didnt recognise the mew e-mail. It used to be cyber-quest.com, they changed it to CQ services.com So just in case you want to removethe old one. Lynnie O.

11-05-2005, 11:01 AM
Avec Ailes = With Wings???

No problem - no need to do anything with the other one right now!!

Take Care