I was sent from my doc to an immunologist to try to get to the source of why I feel sick so often. I feel very virus-y, thought not necessarily like I have a cold or a flu, multiple times per year. The immunologist tested me for lupus and said I didn’t have it. I then took an online lupus questionnaire test and fitted 50% of the symptoms. I also read that about 20% of people with lupus who are tested don’t test positive.
So if anyone knows, what does lupus feel like? I don’t know anyone IRL who has it so I can’t grill them. If I find out that the way I feel is similar enough to lupus sufferers, I’m going to go back and ask for a referral to another immunologist to see if I can’t get a second opinion.
Who is paying for it? How much are you willing to pay. If price is not a consideration just go to doctors until you can find one who will give you REMICADE® off label.
The problem with Lupus is there are SO many different ways it can manifest itself- someone people may only have a rash, some may have arthritic symptoms, and some may be asymptomatic for a time.
Diagnosising it is also a pain with a set system of criteria. And it’s one of those things that can pop up in a myriad of differentials when trying to diagnose someone. I used to wonder about the joke “It’s never Lupus” until I had a lecture on just Lupus alone- basically it came down to “EVERYTHING can be lupus.” So yeah- symptoms vary from person to person.
My personal favorite possible sign of lupus: A false positive Syphilis test. It could be Syphilis… OR LUPUS! Got a patient who was a former Drug user? It could be an allergic reaction to a drug, or a side effect of using drugs for so long… OR Drug Induced LUPUS!
There are also several DNA tests and antibody tests that they run to try to see if you have one of the many possible forms of lupus. Those I would probably pay more attention to rather than just the physical findings, but even then…
‘It’s never Lupus’ is the joke, but the reason it’s so amusing is because it can almost ALWAYS be lupus in the differential.
Which test - the baseline screening or the one that they give you to weed out the false positives on the baseline? The baseline can also be tripped in some women who have taken birth control pills or shots long-term and doesn’t stop coming up positive until about 5 years after they’re off of hormonal birth control.
I believe it’s the normal one- hence the need to then verify and talk to the patient if they could possibly have had syphilis. But I’m not sure on that one, I’d have to go and check.
:does so:
Checks: I believe it’s the **VDRL **that causes the false positives with Lupus, but is the more likely of the two syphilis tests to come up positive for a myriad of reasons, so it’s more of a screening tool with the other used for more specific issues. So your assertions could be quite valid- there are lots of things that can trigger a false positive. I was just using the VD test false positive for Lupus as an example because it’s the one that stood out in my mind of how widespread the choices for Lupus can be- everything from rashes, joint pains, kidney problems, dry skin, to false positive STD tests.
