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Re: Please help
Aug 8, 2016
Hello & welcome. I am so NOT a doctor, so please read in that light. Although the results that ARE available (more on that in a bit) make one think of lupus, what I don't know---just as you said too---is how high your anti-dsDNA really is and what its "Crithidia titer" of 1:40 means.

When I first suspected I had lupus, I thought ANY positive anti-ds-DNA was very meaningful and that it always pointed ONLY to lupus. Over time, I've read more subtleties & gotten educated (a tad) by my doctor. So I now think:

1. Anti-ds-DNA can be positive, yet not "positive enough" to be counted---at least not yet. To illustrate, one of my old labs showed ranges that parsed the result into ambiguous, weakly positive, positive, and strongly positive. To me, this suggests that doctors---unlike us, perhaps---assess HOW HIGH before they count your anti-ds-DNA as one lupus criteria that's been met.

2. Anti-ds-DNA can be "lower-positive" in conditions other than lupus.

3. Anti-SSA (anti-Ro) can be positive in lupus but also in Sjogren's, also in other things (maybe some serum complement disorder, I can't quite remember). And although it's not the first autoantibody we think of when we think of lupus, it can indeed be the *only* AB found substantially elevated in someone with lupus. I don't know how high yours is, relatively speaking, or how much (or IF) its elevation points to one of the conditions vs the other condition (sorry). Finally, lupus and Sjogren's can co-exist.

I'm thinking that minimally your rheum will have lupus and Sjogren's on his radar. Each has its own set of diagnostic criteria. You may find the ones used for lupus in the "sticky post" section [permanent info posts] above the user threads. generally, but not always, a patient must meet 4 or more of the 11 to sustain a dx of SLE.

You could find the diagnostic criteria for Sjogren's elsewhere. There are several simple eye tests to measure for dryness, but the most definitive test for Sjogren's in (ouch!) lip biopsy.

The fact that anti-CCP was negative may point AWAY from Rheumatoid Arthritis. (RF can be positive in conditions other than RA.) You could ask your doctor whether RA is on or off his radar.

Was urinalysis done? (That's a "must" in a proper assessment for lupus.)

Your rheum may or may not have enough to make a call, so if he doesn't, don't panic! The "good" thing here is that presumably you're on the radar now, for ongoing follow-up. Also, since you didn't mention any other lab abnormalities (like BUN/Creatinine or urinalysis, if it was done), that would seem good, to me anyway. Please let us all know what you learn. Wishing you good luck and more clarity soon! Hugs, Vee
Re: Please help
Aug 26, 2016
Hi Everyone! I hope you are well 
I saw the rheumatologist Tuesday. He really doesn't think I have Lupus or anything. He's running a few more tests that weren't run in July:
*CRP
*Anti-smooth muscle/mitochondria..
*Immunoglobulins
*Protein Elec + Interp Serum
*Lupus Anti-coagulant eval with reflex
I’m mad at myself though because we didn’t talk about all of my symptoms. He didn’t take me seriously at all. I had built up this apt so much that I got “stage fright.” I thought he’d help me figure out what is going on and ask me a ton of questions. Instead it turned into a presentation on my part of what I’m experiencing. Since I’m not a Dr, I don’t know what symptoms might be worth mentioning. So I began to rattle off my list of things, to which he would just shake his head and explain away. My constant low grade fevers weren’t fevers bc they were 99.5ish. My photosensitivity only received a stare with a head shake. He was really kind of a dick, the more that I think about it. It was as if he was annoyed that I wanted to know what was going on in my body. God forbid I know what’s up so I can learn what to look out for or what I can do or make sure to avoid in order to remain healthy. He said that the dsdna could’ve been in my system for years, and I’m here now so… And that bc I have dsdna antibodies, it doesn’t mean they were formed bc I have lupus. I wish I would have pressed him to explain how else they might have gotten there. I’m not old and I don’t take RA treatment.
Ugh, he also looked at his text messages while I was talking.
He basically said that bc I don’t present with any symptoms for him to treat and bc my sed rate is good, there’s nothing for him to do. He also said that I don’t look like someone with Lupus. What does someone with Lupus “look like?” I'm not disappointed I don't have a diagnosis. I just want to know what's going on in there and I expect a dr to help me do that.
So we left it at “follow up in one year, unless there’s a positive or elevated result on these tests, and call if any symptoms pop up.” So I get some more info out of the appointment, whether it be positives or negatives. And I’ve now experienced a bad appointment and I feel more prepared for my next appointment, which will be with a different doctor who isn’t 17 and can abstain from texting at work.
Anyone know anything about these tests? He mentioned the CRP is another inflammation indicator and that sometimes the sed rate can be perfect and the CRP be wacko.
As an aside, it dawned on me only a couple days ago: I had the blood work done on a Friday after I’d taken 440mg of Aleve every day for the10 days prior for my achy joints. I was an idiot and took 2 like Advil, I forgot the dosage for Aleve is one tablet (220mg). Anyhoo, could anyone tell me if that could explain my low sed rate?

Interested to see these results. Also waiting on BCBS to send a list of Rheumatologists in my area that are contracted with my plan.
Any feedback you guys have would be much appreciated.
All the best!





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