I have been looking for a post just like yours! I am in somewhat of the same boat. I have rashes and strange spots but no other lupus symptoms. Although my blood tests and ana tests are positive! So, I am also confused as to what I have... Skin, systemic or both. Did you ever get the blood results from your doctor? I was nervous after I got those because I really just wanted this to be the skin type- if anything! But, a positive ana test seems to indicate more. I am so scared of getting sle later in life... It sounds so hard to deal with! I wake up every day thinking that I might feel one of the other symptoms- it is very frustrating!

Hello,

sorry it has taken so long for my reply. I did finally get my blood tests back and it looks like for the moment I only have the skin type lupus. I too am worried about developing sle later on, but from everything I have read, there is only a 10% chance that dle will develop into sle. But every weird pain that I put off before now makes me think twice. I wonder is this pain a precurser to developing sle? I have no idea, I know that the plaquinel seems to work very well, but when things are rough in my life, the skin lesions seem to appear more and the lumps in the back of my head tend to grow larger and move around. I know it sounds weird but the lumps get larger and move from one side of my head to the other. I've found that the sun seems to make it worse, and i'm a very fair skinned person so I try my best to stay out of the sun.
I would think that if your ana tested positive than you do have sle. My ana was negative, if it weren't for the lumps and lesions on my face and my scalp I would have never known that I had lupus because I didn't have the other symptoms. Are there any others out there that have just the skin type lupus?
Thanks,
kelly

Now they are saying that I may be one of the 10% of people with skin lupus that has a positive ana test. My doctor did two other tests that he says are more specific for systemic lupus... A double strand dna & a smith's test... Both were negative. So, it is confusing. What I am hoping is that I am one of the 10% of peope with skin that has the positive ana. My spots are beginning to fade, all I have been using is a steroid cream on them, no oral drugs. Mine definitely seems to be sun sensitive too. I have been staying out of the sun and using a physical blocker with zinc and a sunscreen with uva/uvb (parsol 1789). My doctor says using both will get you the best protection, and hats!! Still only have the skin related symptoms though which is so encouraging! Any more tests that you have done? Sjogrens? Blood tests? White blood cell? Anemia?

I've been tested for all of the other auto immune diseases and so far it looks like I just have the lupus that affects the skin. I'm lucky though, i've not had many lesions, a couple of nasty ones on my face at one time, the plaquinel is wonderful for the lumps and bumps and lesions that appear because of the lupus. The plaquinel seems to keep the lumps at bay, although I am having some nasty huge lumps coming up behind my ear today, but i've noticed that the more stressed out I get, the worse the lumps and lesions tend to get. If you have a positive on the skin lupus, your rhuemy should put you on plaquinel. It's well tolerated and fairly inexpensive. It's been around for many years and was originally used to treat malaria, as it's an anti-malarial drug.
Keep me posted on your progress, if you can't get any answers, move on to a different doctor. With lupus you have to make sure that you're very aggressive towards finding out anything you can because so much is still very unknown about the disease. You can not afford to just wait around and see what some old doctor says, you have to be aggressive in your search for you, because you are responsible for yourself in the long run. Please keep me posted.