Hello there. I am currently in the process of getting diagnosed and had a whole gamut of blood work done last month. I recently went back to my rheumy and he said that I had all the clinical signs of sle but he didn't want to label it yet. I have had positive lupus anticoagulant, positive anti-cardiolipid IgG, low WBC, low RBC and low hgb. The spot UA showed trace protein but the 24 hour protein was fine. The creatinine clearance was low and he said that my kidney function is "borderline". I had a weak positive ana (1:80) and the pattern was anti-proliferating cell nuclear antigen (anti-PCNA) which from what I've read is rare but very specific for sle. My question is why would he be so hesitant to diagnose it as sle especially with the ana pattern being what it is? Does the pattern not have the same diagnostic value as other lupus panel antibody tests such as anti-sm and the others (which were negative by the way)? He has started me on 400mg plaquenil which will hopefully start working soon. I have several other autoimmune disorders already and so I'm very attuned to my body and I know something is wrong.
Thank you in advance for your advice and input. I read the boards daily and I value your insight. --Jenn G.
Jenn, The only two antibodies that are considered sure-fire specific are anti-DNA and anti-Sm.
My understanding is that ANA counts a little but not a lot, as it too can happen in other conditions (RA, scleroderma, etc.), or because of a passing virus or even a family tendency.
The "4 of 11" criteria are what govern (see the "sticky post" at top of Board). So I bet your rheumie is counting something along the lines of ANA = maybe 1; anticoagulant = probably 2; *maybe* anemia & low WBC = 3; and is watching your urine for protein &/or sediment. (But that's speculation on my part, reading the "4 of 11"---as I'm only a patient here like others!) They rarely tell you how they count, is what I found personally.
I must now look up anti-PCNA, as that one is new to me. (Mine was anti-Ro, which itself isn't 100% specific to lupus.) But your rheumie did start you on Plaquenil, which seems to say something, one would suppose... Anyway, hang in there & best wishes, Vee
Jenn, I found some very technical stuff on anti-PCNA, then finally found one article that basically said it's very rarely found in SLE patients & somewhat more commonly found with chronic hepatitis B and hepatitis C. In contrast, the criteria are apparently the most common of the things seen in lupus, else they'd be unworkable.
But with your anticardiolipin & lupus anticoagulant findings, maybe those things tilt his thinking to SLE? (Plus whatever else he observed, of course.)
I hope your dr. will find the right words to make this all make better sense. What is seemingly good, is that you were started on just an antimalarial, which alone wouldn't be adequate were organ involvement active. So that seems to say something, as well. All best wishes, Vee
Vee, thanks for your input. I did have a hepatitis panel done which showed that I had immunity to hepatitis and that I was negative for chronic hep. From everything I can tell regarding anti-pcna it is very rarely found (<3% in sle) but when it is found it is very specific for that and also for the hepatitis. I don't know, this whole thing is confusing. I'm just tired of being tired and in pain. It took so long before I got my diagnosis of Addison's Disease and I was sick for such a long time. I had a hard time convincing my dr. to send me to an endo just to test for it. I was so sure I had it and he was so sure I didn't. I was right. My symptoms now are fatigue, arthritis, headaches, off/on fever, muscle weakness, Raynaud's, mouth sores, sun sensitivity (which brings on harder fatigue, increased arthritis, trigeminal neuralgia, increased nerve issues in my feet, sores, brain fog and nausea). At least I am being treated, so with that I cannot complain. Thanks again--Jenn G.
How have your symptoms been the past few days?.. You might want to consider getting another opinion.. I know its hard to bounce around from specialist to specialist but it took me a long time to finally find doctors that would listen, research and treat my condition properly.. I experience every symptom you described except the mouth sores which I find weird as so many others have them.. I have SLE, Fibro, Raynauds and the list goes on.. Feel comforted in knowing that the plaquenil has seemed to work for me the past 4 years not a miracle drug but it helps a little bit.. so its great that he started you on that, but it is unsettling that he doesn't want to diagnose anything in particular.. Plaquenil is the least harsh medication to treat lupus so that is a positive however he shouldn't be putting you on medication just to put you on it.. You really need to get down to the root of the prob. there are other meds you should ask your doc about for your other symptoms.. It sounds like you have Fibromyalgia as well that is where alot of the fatigue comes from.. I have recently been put on Cymbalta its an anti depressant but is a great med for fibro patients, also Zoloft can be as well.. I notice a huge difference when I remember to take it that is.. Also for thyroid levels Synthroid and Cytamel, cytamel is new to me but seems to also help boost my energy and lessen fatigue.. That could be another possibility for you. my ana has been negative lately but that doesn"t mean you or I dont have lupus it just means something is counteracting to make the tests come out differently which is very common. the way you are feeling sickly etc.. can effect the test results..
