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Re: Lupus?
Oct 20, 2012
Hi, Lucia. First, I'm sorry you've been struggling. I had some of the same problems: massive fatigue, swallowing problems, weight loss, joint pain, some rib pain, vitamin D and B-12 depletion. Also, so much tingling that I suspected MS; that may have been the lupus or vitamin deficiency, I've never been sure (sorry). But I also had recurrent rashes for years that should have spelled lupus, had my local dermatologists been familiar with the rash type I had. i.e., I had enough to create a solid lupus Dx.

Have tests for *more specific* autoantibodies come back positive? I ask that because ANA is actually only a "threshold test"; and it can be positive in multiple conditions, e.g., lupus, RA, Sjogren's syndrome, etc. Once ANA shows up positive, and in the presence of real symptoms (which you sure seem to have), drs. typically run more specific tests for specific autoantibodies such as anti-ds-DNA, anti-Ro, anti-La, anti-RNP, antiphospholipid, rheumatoid factor, etc. (There are a lot.)

Also, where ANA is positive & certain symptoms are present, doctors start evaluating for the ACR criteria for, say, lupus, for one. (You can find the lupus criteria in the sticky posts = permanent info posts at the top of the thread list.) And quite possibly the ACR criteria for rheumatoid arthritis (you could find those elsewhere.)

From what you wrote, it feels like your dr. has considered certain standard criteria but hasn't quite settled on a specific diagnosis? But you also mentioned psoriatic arthritis. Do you have skin rashes? I'm curious, as rashes can add a lot of weight to certain diagnoses. For example, I think the rash in "psoriatic arthritis" is "standard psoriasis" as we know it. HOWEVER, there's also a lupus-specific rash called "SCLE psoriasiform" that looks very much like psoriasis, but isn't. (I had a different SCLE rash, the one called "annular", so I'm fairly sure what the SCLE rashes look & feel like, from a patient's perspective, that is.) Rashes can be very useful to a Dx. For example, when subjected to deep-punch biopsy and immunfluorescent stain tests, lupus rashes can "light up" in linear bands considered virtually diagnostic of lupus, which can seal the deal, so to speak.

I hope you post more & that others chip in soon! Oh---in your shoes I'd want the dr. to speak more to why she's recommending Plaquenil, meaning which condition(s) are likely, in her mind? That said, if her answer makes good sense to you, I'd probably try it, in your shoes. Plaquenil had made a huge difference for me (plus sun avoidance, alas). Hang in there! With my best wishes, Vee
Re: Lupus?
Oct 21, 2012
Thankyou for your response. It's good to get feedback and information so I can see if my symptons are associated with lupus. As I cannot get an clear diagnosis from the dr's I feel like I'm left in the dark. Just curious if you don't mind answering have you been diagnosed with lupus? If so how did they diagnose it?

In aswering your questions, here are my answers.

Result for specific antibodies such as SS-A, Ro-52, SS-B, etc have come back negative. I had a look at the ACR list and from what I can tell, I think I am positive to Malar Rash, Photosensitivity, Arthritis (I get a lot of pains in the sternam, rib, anckles, elbow, fingers) and Abnormal ANA Titre. As I have 4 of the 11 criteria, does this mean I have lupus?

Yes I do have skin rashes that come and go. From the pictures I have seen on the web they appear to be similar to SCLE annular rash. As I am not an expert I can not verify. I'll show them to the rhumy on the next visit. I also have a rash on the back of my neck, about the size of a 20 cent peice, which is readdish, round and flat. My GP thinks it is fungus. I have used canastine and the rash on the back on my neck and it cleared it for a while but it has re-appeared.

Since this posting I have started Plaquenil twice and stopped it twice. First round I took it for 4 days but started feeling nausea, headaches, extra diarrea, extreme fatigue and felt like I had a bad flu. At this stage I stopped the Plaquenil & spoke with the rhumy. About 2 weeks later I tried again, this time I had a alergic reaction (broke out in hive on the arms, hands and ears. swelling of the top lip). I'm waiting to speak with the rhumy again before I continue.

In addition, I forgot to mention that about 2 years ago the endocronologist told me that i have hashimotos as my anit-thyroid globulans were high (>500) but they will not give me thyriod medication yet as I do not need it. I also suffer from blepharitis.
Re: Lupus?
Oct 21, 2012
Lucia, yes, I was diagnosed with lupus. Neither rheumatologist nor dermatopthologist handed me a checklist, but I believe following created my diagnosis of "SLE subacute", meaning no major organ involvement: positive anti-Ro, photosensitivity, arthritis. But maybe the #1: deep-punch skin biopsies with immunofluorescent stain tests (Alcian stains were used) revealed linear bands considered virtually diagnostic of lupus. What's lighting up is circulating "immune junk" that's been deposited between dermal/epidermal layers; this deposition is considered a hallmark of lupus. The dermatopathologist did one new punch, also subjected two older punches to the stain tests. I believe this is basically the "lupus band test".

I think I fell into the rare subgroup called Ro-lupus, in which ANA stays negative but anti-Ro is positive. I think this group accounts for only 3-5% of diagnosed SLE. You'll notice that anti-Ro isn't lited in the ACR criteria. It's seen in lupus, Sjogren's, and maybe other things, too (not sure, sorry). i.e., anti-Ro is a fuzzy finding, so those skin tests were extremely useful for someone like me.

I'm pretty sure my last local GP had tested for autoantibodies but not found any---but why, I don't know. Maybe anti-Ro rises & falls? Or maybe he wasn't using best lab (the tests are notoriously tricky to perform)? Or maybe he didn't draw blood at optimal times, when a flare was on the rise? Or maybe it had just turned, meaning worsened? Dunno and never will.

My SCLE annular lesions were textbook. First had immature form for 4 years: they erupted looking like raised red mosquito bites (didn't itch), stopped growing, then faded. In the second (mature) phase, those same bumps appeared and quickly expanded into perfect red-rimmed circles with clear centers, then expanded further & lost circularity, then faded. Borders were big at max point, some > 6", with new lesions appearing inside the old faded borders. No scarring, maybe a tad of depigmentation. Upper arms & back only. New batch every 2-3 months, more numerous each time. Felt the worst overall as new rashes erupted (headaches, weakness, fever, pain, tingling, GI & urinary problems, etc. all peaked).

And there's a second form of SCLE rash called psoriasiform or papulosquamous, which looks like psoriasis but isn't (so I've read).

I think Hashimoto's can also elevate ANA, so your positive ANA may be viewed as "fuzzy", particularly when lacking autoantibodies associated with lupus. Also, joint pain is seen in Hashimoto's hypothyroidism, so that's probably a fuzzy finding, too. But if something is found that could ONLY mean lupus, that would be very meaningful, I'd think. So the skin approach may be a great option. I'd aim for the best of the best, you want someone really good. (My local dermies & rheumies never did the stain tests, they'd never heard of SCLE-type lupus rashes, etc., they were very dated knowledge-wise.)

BTW, dermatopathologists are both dermatologists and pathologists. I suspect you'd find one only in larger institutions like teaching hospitals.

Another BTW, it's possible to have multiple kinds of lupus rashes. I got one nasty discoid (scarring) on my face. And when I was 9 or 10, I had a head-to-toe blistery eruption, huge watery things, lasted several months (really ugly :D), only suspected decades later by my diagnosing doctors to have quite possibly been a "bullous lupus"rash.

I hope something above gives ideas for new possibilities. You must be so frustrated! I think I'd also want a 2nd endocrinology opinion. Were you given any guidelines of when thyroid treatment "should" commence? Is your endocrinologist retesting you periodically? Let us know what happens next, OK? With my very best wishes, Vee

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