Talked with my Der yesterday and she wanted to assure me that skin lupus will not become "full blown lupus". What is the group's experience or insight on that topic.
Thanks Anna, I appreciate the stats and the honest sharing. I don't have discoid but my skin, when exposed to sun becomes bumpy red angry and sore. When I am in a flare and am in the sun at all I feel like I am going to burst into flame. I call it my vampire symptom. I am exhausted when I have to go in the sun and the makes me sick (which has been going on for many years. I have already been dx with fibro and irritable bowel with some inflammation in my bowel. I am diabetic with complications of gastroparesis. Though I have a neg ANA I always show high levels of inflammation when they do blood work. I ave Joint and muscle pain for over 20years . I am not new to strange symptoms, but I feel the rest of my body has turned on me big time. I have made so many adjustments in my life, I guess I am just tired. It would be nice to just have one simple dx. No I do not want SLE,I just want to get a feel which way my life is going. I guess everyone would like that.:) but I don't like Dr. Who passify or put in a hole with a dx and there you stay. My life has not fit in any kind of a neat little box.
Oh yeah my immune system has sucked since childhood and I have had pleursey more than once. I am already on disability for all the above problems.
Tacteach
I had cutaneous lupus first with three positive biopsies (tumid Lupus). I when to Johns Hopkins and was told there is a 10 % chance I would develop Systemic lupus. Well I developed it within two years after that visit. I still have negative blood work for SLE but was dx because of the medical conditions that keep happening to me. So I guess I am in that small Majority.
Deenie
Thank you Deenie. I am sorry that you fit in that 10 percentage group. And Anna A your answers are so patient and well thought out. Right now I feel that I will just let time take me where it may. I will tell my derm my other symptoms and just see what happens. I will do what they say and take care of myself to my best ability.
And I get my first spf 40shirt today! I hope with that and my new spf 50 hat, going out will be less painful. I got the shirt extra large to wear over my other clothes like a jacket, since I can only afford one shirt right now. Trying to focus on the positives :)
Trayce
Trayce
I only have one sun shirt that I too wear over my other cloths like a jacket. We think alike too funny! They are very expensive. I have a sun hat that I found on sale. It all works well for me, but don’t forget the sunscreen as well. It is great to use it everyday weather your in the sun or not because we still get the rays!
Deenie
Deenie
Even funnier, I got my hat on sale too! I haven't found a good sun screen yet. It is next on my list. I have oily skin on parts of my face so I need to be careful there. Have a great day. ;)