How is lupus diagnosed? ANA negative, skin biopsy positive

Hello @dmmeyers62, Here's some information from Mayo Clinic on diagnosing Lupus.

"Diagnosing lupus is difficult because signs and symptoms vary considerably from person to person. Signs and symptoms of lupus may change over time and overlap with those of many other disorders.
No one test can diagnose lupus. The combination of blood and urine tests, signs and symptoms, and physical examination findings leads to the diagnosis."
-- https://www.mayoclinic.org/diseases-conditions/lupus/diagnosis-treatment/drc-20365790

You might also find it helpful to scan through the list of discussions on Lupus - https://connect.mayoclinic.org/search/discussions/?search=lupus

Hi, dmmeyers,
Sorry to hear about your issues.
The post from John really covers the topic thoroughly. I would add only that your doctor may want some scans and other tests that may seem unnecessary to you, but diagnosing can be tricky, so the doctors order other tests so that they can rule out other diseases.
I think the most important thing is to find a doctor that you trust and then follow their advice to the letter. Stick with the one doctor for awhile or for forever, unless you have a really good reason to change. This can be really hard.
I like to ask the nurses for the names of doctors. LOL- I ask them when nobody else is around so that they feel comfortable telling the truth.
This site is a really good place for advice/suggestions/perspectives/ideas.
Best of luck to you. Hope you get some relief!

Agree with all of the above. Rheumatologist diagnose and monitor Lupus. It is much of a process of elimination unless, of course, you have the "butterfly rash".

Had biopsy of skin rash on arm also have it on my face came back possible positive autoimmune ( lupus,ect) . Having hair falling out,nausea, pain in joints, low grade fevers, kidney stones and hemorrhage every few months, burning and itching under skin, inflammation in kidneys and numbness in feet. I have other autoimmune diseases ( psoriasis , unresponsive celiac disease, DH rash ect) . Has any one had a negative ana with lupus? Would like suggestions of what to do next. I went on Mayo site and they said it is possible to have a negative ana with lupus. (Negative ana lupus). I connected with a lady who had a negative ana with her celiac and her lupus ect. She end up going to a research hospital for them to figure it out because her doctors couldn't figure it out.

@dmmeyers62, I merged your latest post with your original discussion about the diagnosing lupus and autoimmune conditions. As Mayo Clinic mentions, "No one test can diagnose lupus." https://www.mayoclinic.org/diseases-conditions/lupus/diagnosis-treatment/drc-20365790

Like you @jayrob624 was looking for answers and found it was a reaction to medication. See here:
- ANA negative for systemic Lupus: https://connect.mayoclinic.org/discussion/ana-negative-for-systemic-lupus/

@dmmeyers62, it sounds like you and your doctor are still on the path to confirming or ruling out lupus. Have you seen a rheumatologist? Can you go to a large medical center?

Just received a referral to rheumatologist. Was a patient at Mayo Arizona for 2 years to get firm diagnosis on other autommune diseases and then came back to Wisconsin. If doctors here can't figure it out plan on heading to Rochester Minnesota. Been in contact with them and they told me to just call and they will help.

A very helpful skin test is called immunofluorescence for the lupus band test.
It also is a useful technique for Dermatitis herpetiformis. Check to see if this was one of your biopsies.

1) there are two primary types of lupus, though if I’m honest I find this distinction a tiny bit silly (as a nurse practitioner). There is cutaneous lupus (CLE) and systemic lupus (SLE). You can (in theory) have cutaneous only lupus or you have systemic lupus with cutaneous (skin) symptoms. Except… you can also kind of have CLE with a few systemic symptoms and experts will still call that cutaneous only CLE- which is why I personally find the distinction to be silly.
2) If you have a biopsy with “lupus”, you have cutaneous (skin) lupus. Period. Generally it is diagnosed with a biopsy showing interface dermatitis, sometimes with mucin deposits. Also, typically it has a certain pattern when it shows up on the body (where it is, what the rash/lesions look like). The location and pattern help to then further classify the type of CLE into: acute, subacute, discoid. Instead of acute meaning “short-term” like in all other parts of medical contexts, it totally doesn’t mean that at all, ditto for subacute- they are just different patterns of the CLE.

3) I’m not a rheumatologist, so I wouldn’t diagnose you. But you would then go to one and they, maybe like mine, might say: “let’s just call it lupus. Let’s not define it either as cutaneous only or systemic for now- you have some systemic symptoms, let’s start the treatment and monitor you closely and see how you do.”
And then you live your life and get your labs done and try not to obsess over whether it is systemic or not. Because letting go of the illusion of control is part of your journey- because it is definitely part of mine. (Even if I hate it a little bit)

As for the ANA- not everyone has a positive one. I have one. But literally every other lab test you can possibly imagine has always been perfect. And we have done so so so so many.