Join Date: Feb 2004
Re: Lupus and what else?
PVS, hello & welcome. First, I'm so sorry about your miscarriage. That's a loss that's hard to fathom unless you've been there, I think. Please know that many of us can fathom it, and that our hearts go out to you.
I'm just a patient so I can't "answer" anything really, but I can direct you to several sticky posts (permanent info posts) that could help you prepare questions for your next appointment. The stickies are located right above the user threads. Look for the one on Antiphospholipid Syndrome (APS), a blood clotting disorder than can be seen in conjunction wih lupus *or* can apparently occur standalone.
Then, in your shoes, I'd look for additional info on APS. You could try your local library, where you'd find books that cover lupus and its close cousins, including APS. Possible questions I'd probably ask:
1. Can lupus anticoagulant wax/wane? Can it appear only during pregnancy?
2. In addition to the 3 elevated tests (prothrombin time, inr, appt), what OTHER tests are valuable when a clotting disorder is possible? (One of my hardcovers lists quite a few. These tests seem to look both for APS & also less common clotting abnormalities, like inherited "factor mutations", etc.)
As for lupus, there's a sticky post containing 11 diagnostic criteria. Generally, not always, you must meet 4 or more of the 11, which can occur over time (not necessarily simultaneously). First, I believe ANA can be positive in a variety of conditions, not just lupus.
But my understanding of anti-ds-DNA is that it's highly specific to lupus, hardly ever seen in people without lupus... but also that it's possible to have a low-level positive yet be "healthy". (You'll see that anti-ds-DNA is definitely a diagostic criteria.) If mine were positive---even low-positive---I'd want my rheumatologist to literally walk me thru ALL the diagnostic criteria, to prove all were carefully considered *and* will be monitored ongoing. i.e., a doctor saying I didn't have "symptoms" wouldn't be convincing to me IF that doctor hadn't vetted me for ALL criteria and didn't repeat tests down the road.
On this point, urinalysis is a great example. The protein and/or sediment that's possible in lupus, and that suggests kidney impairment, is essentially asymptomatic until one's kidneys become very bad. Therefore, I'd want proof that the right urinalysis tests were done PLUS follow-up testing.
In a similar vein, I'd request copies of my standard labs to look for abnormalities that are also criteria, e.g., hemolytic anema, low WBC, and low platelets. Also your *specialized* labs, too, to see which tests were run (in addition to anti-ds-DNA, etc.).
I don't write this to alarm you, just to convey the many things I did very poorly during my problem years. For example, I didn't know lupus was a candidate, so I didn't read. I didn't request labs to verify what tests were run. I had multiple skin biopsies that were woefully incomplete (immune stain tests were omitted). Worst of all, my local doctors didn't take the time to walk me thru the criteria. My last (and current) rheumatologist literally showed me his notes and his checkmarks, which took all of 30 seconds for him to do & for me to absorb, so I (mentally) gave him an A+ for communication.
I hope this gives you a head start, that you post again soon, and that others chip in with their thoughts. I'll say bye for now, with my best wishes, Vee