... I have lupus and I have extreme photosensitivity. I have to wear sunglasses even when in the car. I also cannot take any heat either. ... (4 replies)
... I have been diagnosed with Lupus for the past 4 years, but had symptoms for several years before. I have joint pain, hair loss, weight gain, skin rashes, and extreme photosensitivity. I was wondering if anyone has had any successful treatments for the photosensity and skin rashes. ... (4 replies)
... the photosensitivity that is worse in the spring reminded me other something I read. Poylmorphic light eruption. ... (1 replies)
... and one of the more disturbing for me, extreme bizarre allergies. ... (6 replies)
... lupus case of photosensitivity this severe? ... (5 replies)
... Jessica, I'm so sorry you have the problems that led to these formal Dx'es; but I'm glad for you that you now know what you're dealing with, that your doctor is fine-tuning your treatment plan, and that you'll see him regularly.
You state that your rheumie added Sjogren's syndrome to your Dx. Was this because of a positive anti-Ro? I was told it can be positive in... (3 replies)
... Ro antibodies, which iare apt to produce extreme photosensitivity, I was told. ... (8 replies)
... Dee, I never had a positive ANA, but nevertheless I was Dx'ed with an intermediate type of lupus that fits "inside" the broader SLE definition. Thus it's called a "subset" of SLE. It's callled SCLE = subacute cutaneous LE.
Within SCLE, maybe as many as 1/3 of people with it have a *negative* ANA. The antibody most associated with SCLE is anti-Ro, which it took a long... (11 replies)
... extreme photosensitivity, poor circulation to fingers and toes, migrane headaches far more extreme than before and fatigue that doesn't seem to stop. I developed a lot of food sensitivities over these last couple of years. ... (17 replies)
... would add real weight to the blood findings, as would extreme photosensitivity. But both these are also seen in primary Sjogren's. ... (10 replies)
... Hi, Sarah,
Of course you are NOT intruding! This was the most amazing thing for me to find, too: other people with some layman's insight into things that sound somewhat similar to what you are trying to track down. We'd never find each other except for boards like this. Very good thing, yes?
Anyway, my rash was Dx'ed as SCLE = subacute cutaneous lupus erythematosus. ... (8 replies)
... What in the world is wrong with me? Obviously there's an underlying rheumatoid/autoimmune issue going on, but what is it? I meet 4/11 of the dx criteria, but they are all atypical:
"Molar" rash: I get a mild, flat rash on my cheeks, but it looks more like rosacia than the standard "butterfly" rash. It comes/goes within hours.
Discoid rash: I get rashes on my neck and... (3 replies)
... By far, the hardest aspect of all of this has been the extreme fatigue. ... (3 replies)
... ay affect mouth, nose, more rarely eyes and vaginal tissue. Occurs in both cutaneous and systemic lupus. Not considered dangerous. Pain is possible, ranging from extreme discomfort to none. ... (0 replies)
... Since this posting I have started Plaquenil twice and stopped it twice. First round I took it for 4 days but started feeling nausea, headaches, extra diarrea, extreme fatigue and felt like I had a bad flu. ... (3 replies)
... It's been a little while since I posted here last. To recap; I'm a 25 year old female. After almost 6 months of tests, repeat tests, and mris, my diagnosis has finally been narrowed down to an "auto-immune process." And further narrowed to lupus or sjorgen's syndrome. I started seeing a rheumy last month in Boston who has narrowed things down to my repeat ANA... (6 replies)
... Hi!! Just wanted to comment on Lupus Bloodwork. I was dx with a postive ANA 1:640 and positive SSA....I saw 3 rheumy docs...the most impressive and the one who dx me with Lupus was a grad of Johns Hopkins...she told me this blood combination is definately LUPUS (SLE)...I also had extreme fatigue/ facial rash/photosensitivity/infertility/joint pain and livido... (19 replies)
... The first symptom I developed was extreme fatigue. Couldn't get out of bed, and no matter how much I slept I still felt week and tired. ... (1 replies)
... I also have joint pain, extreme fatigue, low grade fever, muscle weakness, brain fog and very low appetite which has caused weight loss. ... (4 replies)
... Hi everyone.
Over a year ago, I was diagnosed with an autoimmune-related skin condition. After finding out that people with this skin disorder are likely to have a systemic autoimmune disease, I began doing research on autoimmune disorders. I was disconcerted when I found that I actually had MANY of the ACR criteria for lupus (malar rash, photosensitivity, joint pain) as... (10 replies)