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Hi everyone.

I've been reading the boards for a few weeks now and I have a few questions I'm hoping someone can help me answer.

I've been presenting with symptoms that are characteristic of Lupus but missing some major symptoms.

I have a rash that comes and goes and sometimes flares up but is usually limited to my hands and feet but will sometimes be on my forearms. However there has never been anything on my face.

I also have joint pain, extreme fatigue, low grade fever, muscle weakness, brain fog and very low appetite which has caused weight loss.

I do not appear to have any photosensitivity although I did when I was younger, no ulcers, or scaring rash and no renal problems although I am anemic.

Looking back at medical records I can see that I have had attacks or flares like this going back quite a few years but was always written off as something else like flu, cold, or depression.

However I do believe it is something more and Lupus has been one condition that was brought up.

If anyone could offer any information or advice it would be greatly appreciated. Thank you very much.

Allie
Alliee, hi & welcome! The question you ask is a good one, as I suspect many doctors don't explain/apply the logic properly. Here are key things my final two doctors (rheumatologist & dermatopathologist) told me, that had gone right over my head.

ACR CRITERIA. These are in a sticky post (permanent info post) at the top of the thread list. To suppport a diagnosis of SLE, you generally must meet 4 of the 11. This can happen over time, meaning not necessarily all at once. Think of checking each in indelible ink. (That said, some criteria are so characteritistic of ONLY lupus, that they'd point to a Dx for some specialists. e.g., high anti-ds-DNA, malar rash.)

AUTO-ANTIBODIES. You'll see only several in the criteria, because these are ones seen pretty much only in lupus. However, other "fuzzier" ones are possible. (Example: I tested positive for anti-Ro, seen in both lupus & Sjogren's syndrome.) Moral here is that drs. should look beyond the ones listed in the formal criteria.

SYMPTOMS. Here's the hard part! Many lupus symptoms are somewhat "fuzzy" and are seen in many other conditions, in rheumatology, in endocrinology (like thyroid disorder), in Chronic Fatigue, in Fibromyalgia, etc. That's why the ACR criteria exist, to isolate things that distinguish lupus from everything else.

And you don't need "all" the symptoms. It's the ACR criteria that count...

RASHES. The ACR criteria contain just two, yet there are maybe a dozen more lupus-specific rashes. A dermatologist or dermatopathologist can do a deep-punch biopsy, to microscopically look for cellular changes; then do immunofluorescent stain tests, to look for accumulated "immune junk" between the dermal/epidermal layers, which is a hallmark of lupus. (I never had a malar. Instead I had years of a nonscarring targetlike rash, finally diagnosed as SCLE. I also had a single discoid scarring lesion, on my face.)

Have you seen a rheumatologist? A dermatologist? Anyway... I'll quit for now to give you time to read & mull. Then I hope you post again! Sending warm wishes, Vee
Alliee, rashes can indeed be a pip---there are literally thousands. Mine (upper arms & back) turned out to be subacute cutaneous lupus erythematosus (SCLE), annular (targetlike) form. There's a second very different SCLE rash, called papulosquamous or psoriasisform, that looks somewhat like psoriasis. My local dermies (many) had never heard of the SCLE rashes; and I honestly suspect they only knew about discoid and malar (very out-of-date!). Much later, I learned that anti-Ro is often found in people with SCLE rashes, and sure enough, that was the one I tested for.

Do your rashes itch? Scar or depigment? Are they flat or raised? What color are they? Do you feel worse overall as your rash is "on the rise"? (That last can be useful. I told all my local drs. how wretched I felt. The rash itself didn't bother me at all; instead, it was that I felt terrible overall, which should have conveyed volumes to my drs.)

Lupus isn't the only systemic condition that can bring on rashes. For example, I know a woman with dermatomyositis, with rashes & severe muscle pain/weakness.

If you haven't already, you could log symptoms with date of onset, then date when they faded---to see if you can find any pattern. (It took me a long time to realize sun was a trigger. That sounds stupid, but early on, there was a lag between exposure & rash onset. By the end, I got new lesions within hours of sun.)

If this is autoimmune (and I couldn't know, of course, as I'm only a dumb patient), finding an expert dermatologist can be difficult. If you have lupus support groups in your area, you could ask them for names of drs. they've had good luck with. Also, READ. There are some excellent books in most libraries that were written for patients. See the sticky post, for a few.

Keep us posted, OK? We're here anytime. More warm wishes, Vee





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