Mary asks…
Could I still have lupus if my labs came back negative? My symptoms, rash on hands,loss of hair, ringing in?
hands,loss of hair, ringing in ears, pictures of rash on hands and outbreak on eyelids, previous chronic Epstein Bar,migraines, diverticulitus, joint pain in hands, extreme fatigue, no butterfly rash but face breaking out with acne like never before,some trouble concentrating, anxiety,blurred vision at times. The labs came back with a vitamin d deficiency only. The doctor suspects that a positive ANA will come later. She still wants me to take the Placquenil and Prednisone but said she can not say that I have lupus. The prednisone made me feel much better, rash gone, more energy. If it does not show on the labs, what else could it be and is this typical of lupus?
health answers:
I answered your other question. No one here can say yes you have Lupus or no you don’t. We don’t have your medical records, blood tests and none of us are doctors. I’ve done quite a bit of research because I’m having similar symptoms.
Your symptoms do indicate that something is going on, but they are definitely not strongly indicative of Lupus. All of your symptoms could be explained by other things. The rashes on your hands could be because of an allergic reaction. Hair loss, stress. Ringing in your ears, medications, many medical conditions. Chronic Epstein-Barr, this in itself could explain your symptoms. Migraines, hormones and possibly related to the ringing ears. Diverticulitus, could be related to your diet. Joint pain in your hands, could be related to over use, muscle strains, osteoarthritis. Fatigue is the most non-specific symptom that there is. Acne is most likely related to a bacterial infection or hormones. Trouble concentrating could be related to your fatigue. Anxiety is most likely a separate condition. The blurred vision could be related typical aging. I’m not saying that your symptoms are definitely not Lupus-related, but they definitely do not ‘scream’ autoimmune to me. There are many other conditions that could explain your symptoms.
You can have Lupus with a negative ANA, this occurs in about 5% of people with Lupus. 1.5 million people in the USA are thought to have ‘some form’ of Lupus. So 5% of 1.5 is not a huge number when over 300 million live in the USA. I would assume that most of the 5% who have a negative ANA will have a positive anti-dsDNA, anti-SM, anti-histone, anti-RNP, anti-SSA or anti-SSB. If you have none of these and a negative ANA, it’s very unlikely you have Lupus, but it’s still possible. I have heard of people being diagnosed based on a punch biopsy of a rash and having negative blood tests.
If you’re in the middle of a flare and you don’t have a positive ANA, you will probably never have one. Blood tests often reflect how you feel, sometimes they don’t.. But if you’re in the middle of a flare and your blood tests are negative, they’re probably negative because you don’t have the condition.
Prednisone is an amazing drug. If you have Lupus it will improve your symptoms, but even if you don’t have Lupus or an autoimmune disease, you’ll probably still feel amazing on Prednisone. It can create a euphoric mood, improved fatigue and give your a lot of energy and Prednisone or cortisone creams are often given for severe rashes. The fact that Prednisone makes you feel better could be discredited quickly.
I would strongly, again, recommend that you find a new rheumatologist. It seems quite unlikely that this is Lupus. I’m not discrediting your symptoms, there’s obviously something going on. I’ve seen a number of doctors and I have a positive ANA and an elevated ESR, my symptoms are far more consistent with Lupus and my rheumatologist said it’s definitely not Lupus.
Please get a second opinion.
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