When it rains…

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.

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5 thoughts on “When it rains…

  1. Pingback: A little Job-ian « Practical Whimsy

  2. I have multiple autoimmune disorders, and have been told over the years that I will probably get lupus, that I have lupus and most recently that I do not and probably won’t get lupus. I’ve been on plaquenil for 6+ years. The first spring I was on it, I began to get a rash on whatever skin was exposed to the sun. My Rh at the time said the rash was either caused by the autoimmune disorders, or by the plaquenil. Regardless, the only thing they’d give me for the rash is plaquenil, so he just told me to stay out of the sun. Long sleeves and hats are helpful. Solumbra is a company that makes sunproof clothing, hats etc. Look for high SPF sunscreens with UVA and UVB protection for your hands, etc. Anytime you need sympathy, empathy, or advice, just let me know!

    Autoimmune disorders are so hard to diagnose because most do not have definitive blood tests, or any other definitive test. Doing your own research is usually a good idea. I try to stick to WebMd and the NIH sites, as recommended by my drs.

    The one benefit that I’ve had from having these conditions is that I am far less judgemental of strangers. I get strange looks when I’m wearing long sleeves in 90+ degree weather. Things like that have made me realize that you never really know what someone else might be going through. Many ailments are invisible to the naked eye, especially many autoimmune disorders.

    If you have any problems with fatigue/energy levels, I’ve found the spoon theory a good way to help people understand. http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

    • Thanks, Nancy – didn’t realize that. I think my count is now at three. It’s certainly possible that the Plaquenil is causing the sun sensitivity, but I’ve been on it the past two summers and I don’t recall getting this type of rash before. Autoimmune diseases run strong in my family – but so far I’ve been relatively lucky to be fairly free of typical symptoms. Hope the same can be said of you!

  3. My aunt was diagnosed with lupus a few years back and gets the sun rash. Her meds and staying out of the sun have really helped her keep it in check. Good luck.

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