Symptoms of lupus?
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Hoping for any advice from those with experience. In 2013 I had an incidental finding of a positive ANA speckled pattern with a titre of 1:360. This wasn't looked into as the doctor didn't think it was related to my problem at the time ('hives' over joints). Fast forward to recent years. In our mild summers I'd notice hive like rashes appearing after sun exposure. I didn't pay much attention til we were on holiday a couple of weeks ago. After 2 days in the sun, my entire body was covered in these hive like spots, and also a couple of red rashy looking patches on my legs. No sunburn or anything. Since getting home, I've been exhausted. Tired like I've never been (and I have 2 young kids.) I've had a couple of evenings with a low grade fever and aches, and some mild abdominal pain. The first 5 days I had unbearable constant itching. I've had numbness in my toes at random (though this isn't new, I believe I've a touch of Renaud's) . I recently have started having mild to moderate pain in muscle upper back when I breathe in. My doctor sent me for some blood work. Of note were an elevated crp, decreased wbc. Some protein in the urine (only +1). She also repeated my Ana and a antiphospholipid antibody, but those are not back yet.
I don't believe I've had a malar rash.
I have an aunt with lupus, and I have autoimmune thyroid.
I'm seeing my doc again once those other tests come back and she said we'll go from there but just wondering any opinions from anyone who's experienced this. It makes me nervous but I have to have a reason why I'm feeling like this. I appreciate any input.
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jujubeee Smt555
Posted
Sounds very much like lupus. One suggestion might be to see a dermatologist during one of your rashes to have a skin biopsy. It's a good option to use for getting a diagnosis (which can take years).
Some of us, like you, are extremely Photosensitive and breakout in hives. It's actually a hypersensitive reaction to the UV from the sun.
Just a quick note - while there's no cure for Lupus, there are medications that can help minimize your symptoms.
A good rheumatologist will consider all your symptoms and labwork together. Your ANA will help determine what autoimmune disease your antibodies are pointing to. (lupus, mixed Connective Tissue Disease, sjogrens, scleroderma) your blood complement levels, your wbc's, crp, and sed rate will help your specialist diagnose you along with your symptoms. You might want to keep a log and take pix of your rashes.
The 11 symptoms criteria used by the ACR to diagnose lupus are:
Butterfly-shaped rash
Raised red patches on your skin
You're sensitive to light
Ulcers in your mouth or nose
Arthritis in two or more joints, plus swelling or tenderness
Inflammation in the lining of your heart or lungs
Seizures or other nerve problems
Too much protein in your urine
Low blood cell counts
Certain antibodies in your blood
Results from a blood test called an ANA test that suggest you may have too many "antinuclear" antibodies, which could be a sign of lupus
4 out of the 11 is considered likely to be lupus.
Also remember sometimes your ANA can be positive or negative. A positive doesn't mean that you have lupus for sure, and a negative result doesn't necessarily mean that you don't have Lupus. That's why it can be hard to diagnose. But hang in there, you're not alone!
BTW, nice to meet you, I'm Julie!