So I saw my rheumatologist two weeks ago. A few of you have wondered why some of my posts a have been tagged “lupus” despite not mentioning lupus once. Over the past three years, I’ve been going to the rheumatologist to check up on my APS, but also because of what they categorized “lupus-like syndrome.” What do they mean by that? Well, apparently I had a number of the labs that one uses to help diagnose lupus, but not quite enough to push me over the edge. Lupus (and many other auto-immune diseases) can actually be super hard to diagnose – sometimes it’s obvious, but there are also a ton of borderline cases out there. Such is the case with me. There is also a high correlation between APS and lupus, though not a 1:1.
The end result is that I was put into a wait and see category – the “you don’t have lupus yet, but there’s a pretty good chance you’re going to develop it at some point.” Such a good chance, in fact that they’ve had me on the lupus drug hydroxychloroquine (Plaquenil) for the past two years. Of course because of the correlation between APS and lupus, that is also largely to help keep my APS in check.
There can be a lot of symptoms with lupus – the most common is some kind of sun-induced rash – usually on the face. I’ve never had any of the outward manifestations of lupus, and that’s one of the reasons I was simply “lupus-like.”
Well, in May of this year, I went for a long walk in the sun. I noticed at the end of the walk that I was getting a rash on my chest and my arms – the areas most exposed to the sun. It hasn’t gone away since, and it seems to get worse with additional sun exposure before fading a bit again. I figured I should call the rheum.
Her prognosis: “I think it looks like a lupus rash.” I say, “But, I don’t have lupus, remember?” Her response, “Yeah, well, you’ve always been borderline.” I’m thankful I don’t have to be in limbo anymore, and grateful that my symptoms are still mild (labs were normal), so we’ll just take it one day at a time. I hate to say that I’m glad to have been diagnosed, but in a way, I kind of am – it’s a lot easier to know what you’re supposed to do when you have a definitive diagnosis than a maybe, possibly one.