Hi, I have fibro and osteoarthritis but also something else that my rheumy is still trying to figure out. I have symptoms of an autoimmune illness for the last 8 years and am getting nowhere in finding out which one, at this stage I am so fed up of being in such pain and nothing specific showing up.
I have constant joint pain, fatigue, costocondritis,sensitivity to light,rashes, anemia,severe reactions to insect bites, but negative blood tests apart from occasionally high esr,crp. Is it possible to have lupus without positive bloods, my rheumy is saying it could be a possibility that in the future we will get a blood result that will point us in the right direction.
Hi. I think it's possible in several scenarios, but these may not be all!
1. DLE (discoid lupus) is the mild subset: it's not "systemic" but can cause cosmetic damage (scarring and depigmentation). Circulating autoantibodies aren't present, meaning no ANA (the general one) or any of the specific ones (anti-ds-DNA, anti-Sm anti-Ro, anti-La, anti-RNP, etc.)
2. ANA-negative SLE, aka Ro-lupus. In this, ANA stays negative but anti-Ro is positive. This is RARE, maybe 3-5% of all SLE. Likeliest rashes are the two SCLE's, but malar is possible.
3. Slow-evolving SLE.
4. ANA can be hard to catch, as it can rise/fall as flares build/recede. Problem is, if ANA tests negative, many drs. don't watch/test further, or test for more specific antibodies (see #2).
In your shoes, I'd want to know/do
1. Are your rashes lupus-specific? Best way of telling is biopsy *including* immunofluorescent stain tests; this is the gold standard for possible lupus rashes. What do they look & feel like? Do you notice any correlation to sun? BTW, a dermatopathologist may be a better bet than a "plain" dermatologist.
2. What blood tests were done? ANA only, or were the more specific autoantibody tests done, too? (BTW, I'd collect copies for my personal files.)
3. What kind of anemia?
4. Read! You'll get insight into how well your dr. understands lupus, how well he communicates, etc.
I sympathize. I had a low-odds presentation (per #2 above). I saw many suburban specialists before taking myself to a metro teaching hospital. Answers were readily available thru my rashes, had the local drs. just biopsied those *correctly*. My city drs. were lightning fast, and I'm doing much better now. Hope this helps some & that you post more when you can. Sending hugs, Vee
The Following User Says Thank You to VeeJ For This Useful Post: Agenda (09-21-2012)
Thanks for your reply vee, they can find no cause for my anemia. I have had all the tests done colonoscopy,endoscopy and gynae all negative. Iron tablets made no difference to my levels hgb 10 ferritin 6. Now I am on iron injections.
I live in Ireland and they do not give you a copy of your blood tests but I know my ANA was neg, apart from esr and crp sometimes being elevated nothing else has shown up. If I go out in the sun without sunblock I will get a rash that drives me mad with the itch.
I also suffer from migranes, severe reaction to insect bites and recently really bad cold sores on lips.
I never thought that I would be in a place in my life were I wanted something abnormal to show up in a blood test, but now I pray for it, I feel like a hypocondriac when I go to see my rhuematologist a long list of complaints but nothing to prove they are real, if that makes any sense.