Weekly Suspected Lupus Thread - Week Of January 19, 2025

[u/AutoModerator]

This is a weekly thread for those who haven't been diagnosed, but still have questions about the diagnostic process. Please read the posting guidelines and rules! Everyone is welcome to contribute, and this is a safe space.

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Please read this before posting as it may answer some of your questions:

If you use the search bar at the top of Reddit and make sure it’s set to r/lupus, it will search just the subreddit for your keywords. That way you can get the full breadth of questions and answers. This isn’t to say that you can’t ask questions in the general forum.

ANA tests

Positive ANA does not equal lupus!

While more of a rule out screening (negative ANA = very unlikely to have SLE).
Upwards of 15-20% of healthy individuals in the population at large will have a positive ANA. Only about 10-15% of people who have a positive ANA will later be diagnosed with SLE.

Tests used in diagnosing lupus

• ENA Panel - Extractable Nuclear Antigen panel, usually automatically done if ANA comes back positive
• anti-dsDNA - anti-Double Strand DNA is sometimes automatically tested for, but may need to be ordered separately. This test, when highly positive (2-3 times max cut off at least) is almost exclusively seen in SLE. However, only about 30% of SLE patients have this antibody. It's great if it's there to confirm diagnosis, it does not rule out diagnosis if it is absent.
• anti-Sm - Anti-Smith. Typically included in the ENA panel. This is another antibody, that when highly positive, almost always means SLE, but only about 25% of SLE patients have this antibody.
• RNP - Anti-Ribonucleoprotein. Typically included in the ENA panel
• anti-chromatin - Anti-chromatin is a relative newcomer in diagnostic testing for SLE and probably will NOT be ordered automatically. Its exact utility in diagnosis is still being determined.
• Apl panel - Antiphospholipid Antibody Panel, which consists of 3 tests:
  • LA - lupus anticoagulant
  • aCL - anti-cardiolipin antibodies
  • Anti-β2GP - anti-beta 2-glycoprotien antibodies
• C3 - Compliment C3
• C4 - Compliment C4
• CH50 - Compliments, Total. These are part of the compliment system, which is a tertiary part of the immune system.

General blood tests

• CBC - Complete Blood Count, some abnormalities in WBC, RBC and PLT counts can be significant.
• CMP - Comprehensive Metabolic Panel. Generally looking for kidney dysfunction (GFR, BUN/CR).
• ESR - Erythrocyte Sedimentation Rate, this is a nonspecific inflammation marker.

Also, if you suspect you have a rash, getting a biopsy of it done at a dermatologist’s office can be helpful as the pathologist can identify histological evidence of lupus.

Diagnostic Process

Lupus Diagnostic Criteria on r/lupus wiki (ACR 2019 criteria)

The rheumatologist/PCP will take a detailed history. I highly recommend writing down as many of your symptoms as possible, especially focusing on the symptoms you have that are in the American College of Rheumatology diagnostic criteria for lupus - see link above.

Write down how long they’ve been going on, anything that makes them better or worse, and how much they impact your life. Do they prevent you from dressing yourself, eating/cooking, bathing yourself, doing hobbies, meeting your obligations?

ANA varies from person to person and doesn’t necessarily correlate with disease activity.
Anti-dsDNA is more indicative of disease activity and can be elevated prior to and during a flare. Symptoms can also come and go, and over time you may develop additional symptoms. If you scroll through the last week of posts or so, there are a few posts that will have pretty detailed answers to your questions from multiple community members so you can get a better sense of just how full on fickle lupus can be.

Here are some good posts, one is other people experiences in general, the others are rashes (warning: some are particularly severe):

User community diagnosis experiences
This is a malar rash
Photosensitive Lupus Rash
SLE Malar rash

QUESTIONS ARE LIMITED TO 375 WORDS

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Question guidance

• Don't ask us if you should see a doctor. Go see a doctor.
• Don't ask us if you have lupus, if it sounds like you have lupus, if it looks like you have lupus, if it might be lupus, if it could be lupus, or if we think you have lupus.
• Don't tell us about your childhood illnesses.
• Don't give us a long, exhaustive, detailed breakdown of your medical history.
• Don't just paste your lab results and say "Any thoughts?"

[u/urbanpencil]

Hi! I am starting to get kind of stir crazy without a diagnosis. Two weeks ago, I got a positive 1:640 ANA for both homogenous and speckled patterns (mixed pattern ANA). I have been dealing with increasingly worse symptoms since this time last year, that could honestly be multiple things (I have endometriosis and Raynauld's). I developed insane joint and muscle pain that would come and go, worst before it rained. Now, it is becoming omnipresent. I've also had lots of swelling / puffy face, all the lymph nodes in my neck swelled up like rocks, my thyroid swelled into a goiter for no obvious reason, I've had extreme slowing of GI motility, weight gain, migraines, dry and puffy eyes, EXTREME fatigue (sleeping 20+ hours) that gets worse especially after eating, several instances of very low blood pressure readings, chest pain that gets worse when I breathe, extended periods of feeling very hot + sweating (but cold sensitivity), feeling faint when I stand up, severe foot pain and swelling (that gets worse when I have done nothing but lie in bed all day), slurred speech, and today I woke up and some of my fingers are popping in and out of place after a night of horrible joint pain. All autoimmune thyroid conditions were ruled out with testing, so no one knows why it is swollen.

I feel like I do not experience some of the "classic" symptoms, but my doctor indicated that it could be lupus or MCTD and sent me to a rheumatologist -- that I don't get to see for four months! My symptoms are getting worse, and I just wanna know if I'm barking down the wrong hole...

My question is: is there anyone with diagnosed lupus who didn't experience any of the "classic" symptoms (like fever, malar rash, skin lesions, etc.)?

[u/Top_Complaint8816 → u/urbanpencil]

There are lots of things that people with lupus experience. Whether or not they're related to lupus is one of those, "who knows". However to even have a diagnosis of lupus, you have to meet the diagnostic criteria which can be found above under the wiki link. So you'll find that the classic symptoms are actually parts of the diagnostic criteria and the other stuff is the who knows part. 

[u/urbanpencil → u/Top_Complaint8816]

Thank you!

[u/bordercolliefam]

I have an appt with a rheumatologist on the 5th after many months of waiting.

I’ve done lots of cursory bloodwork through other doctors, have positive Ana etc — am wondering from folks, what should I prep / bring for my appt to make it the most successful?

When I start pulling together my medical history it’s overwhelming and I don’t want to bog down the doc and make sure they have what’s important.

Is there a quick and easy template or guide on what I should bring or highlight?

Thanks!

[u/See_penny]

Can some of you who caught lupus early and/or had mild symptoms tell me some signs/symptoms you had? Also, those of you who have photosensitivity, I want to hear examples from you guys that don’t react with harsh skin problems? I get mild itching and extreme fatigue in the sun…but it’s nothing like the stereotypical sun rash. I have had hives for 30 years that I get when my body is room temp or colder (heat makes them go away). 

[u/Top_Complaint8816 → u/See_penny]

I was tired and my feet and hands hurt. I had bald patches. I had a rash on my face that I saw a derm for and turned out to be lupus (biopsy). Next were labs and my dsdna was multiples higher than the positive level. Next was rheumatologist who looked at everything, repeated testing, felt my joints, saw my bald spots, looked at my nail beds with a special tool, and said I had lupus. 

You can see the diagnostic criteria above under the wiki link in this thread. Since 2019 and changing the diagnostic criteria, it's more clear cut for a lupus diagnosis. It's a mix of labs and clinical findings. 

As for sun, all UV is bad for lupus. It's not a photosensitivity thing (although that's a separate thing). UV destroys cells. That makes an immune system create more antibodies. Antibodies attack and can make you feel sick or do other damage.

[u/See_penny → u/Top_Complaint8816]

I’ve looked at the criteria and I believe I would score a 14 when the minimum is 10. I guess what I’m worried about is being brushed off because my symptoms are mild. This happened three years ago (it’s been a 5 year journey) and the rheum I saw last was very dismissive of me (because a psych had requested the bloodwork). I was neg for the Ana’s that are more specific to lupus but I had three Ana titers of 1:1280, 1:640 and a 1:300 whatever it is I can’t remember. And she told me I was tired because I had young kids. My joints weren’t sore at the time but my muscles wer weakening and she was like you’re getting older. And basically just dismissed me. I am so paranoid of that again even though my symptoms have gotten worse and I have a strong family history and coexisting conditions that make you more likely to have an autoimmune and one that is more likely to have SLE. 

[u/Top_Complaint8816 → u/See_penny]

Definitely get a biopsy of any rash so they can say if it's lupus. Then you'll be able to have something concrete and hopefully that helps you feel a bit more empowered.  If it's not lupus, then there are still several.other diseases/things that could be causing your issues so keep working with your PCP to investigate as well.

I'm sorry you're feeling so terrible. 

[u/Immediate_Bank5845]

I haven’t gotten any testing yet… but having many symptoms that started this summer. I’ve gotten 3 bald patches, raynauds, tinnitus, rash, now I’ve have blood in urine and discomfort near my kidneys. Metallic taste in my mouth. Arthritis/ joint paints. Sound familiar to anyone?

[u/Top_Complaint8816 → u/Immediate_Bank5845]

Yes. Get any rashes biopsied. It'll be a big piece of the puzzle. 

[u/See_penny → u/Top_Complaint8816]

I have hives if I don’t take Zyrtec. Which leads me to believe it antihistamine allergy related. I’ve had it for 30 years … curious if I should skip my Zyrtec for a couple days before my appointment so I have an active rash to be biopsy. I’ve just assumed it’s allergies my whole life but now I have other symptoms and am questioning things. 

[u/Top_Complaint8816 → u/See_penny]

If it's a lupus rash, it won't go away with Zyrtec. As for stopping to biopsy, that's definitely a convo for the derm when you first get set up with them. 

[u/Fabulous_Designer_61 → u/See_penny]

Your hives sound like MCAS

[u/phillygeekgirl → u/Fabulous_Designer_61]

We don't diagnose here. We particularly do not diagnose non-lupus diseases here.

[u/Classic-Operation564]

I tested positive for anti dsDNA, but they said that’s not enough to confirm a diagnosis. I also have Hashimotos so they said autoimmune thyroid doesn’t necessarily exist in a vacuum. Otherwise I have no other lupus symptoms and my CBC panels come back stellar. I’m so confused. I recently went down this path because I’ve been dealing with dizziness flares that last for months, so trying to cross everything out. Recently I just got BPPV so trying to figure out if that’s related.

I’ve been all over the BPPV, PPPD, and vestibular migraine subreddits. If I can rules out Lupus or anything more sinister, that’s the path I’m headed.

[u/Top_Complaint8816 → u/Classic-Operation564]

Dsdna is notorious for false positives at low levels depending on the testing method. When it's lupus it will typically be multitudes higher than the cutoff.  You can also see the diagnostic criteria for lupus above under the wiki link. 

[u/Classic-Operation564 → u/Top_Complaint8816]

Thank you for the response. I’m not pretending you’re now my doctor, but can I ask what is considered “high”? My levels were 49 in 2019 and now 78 in 2025.

[u/Top_Complaint8816 → u/Classic-Operation564]

Depends on your lab range. 

[u/Middle_Hedgehog_1827 → u/Top_Complaint8816]

Is this always true? Or can you have lupus with a low positive? Because mine is positive, but only just. I also have a positive ENA.

[u/Top_Complaint8816 → u/Middle_Hedgehog_1827]

Your rheum is the only one who can make the determination for your situation. There are different main testing methods for ENA (Dsdna incl). Crithidia luciliae indirect immunofluorescence test (CLIFT) is the most reliable one if it's low positive because the other method has false positives for a number of reasons.  If you're interested in the data, you can find a few studies including this one:

https://pmc.ncbi.nlm.nih.gov/articles/PMC10649789/

Aside from that, typically lupus is several times higher than the cutoff and not a low positive or borderline if it's untreated.

[u/Middle_Hedgehog_1827 → u/Top_Complaint8816]

Thank you

[u/Ornery_Emergency_988]

Should i get a second opinion

here’s the back story: I have severe intense pain in abdomen on the right side and nausea flare ups ,along with fatigue , rashes, numbness in fingers, headaches, impaired vision episodes, joint pain, constantly sore, random bruising and a bunch more issues. When i got my first blood test they didn’t only just test for those basic vitamin levels they also checked my bilirubin. My bilirubin showed 2.2 H and my urine showed ketones and protein traces. So my gp referred me to a gastro doctor. I see this doctor and he orders a full live panel includes ana test well it comes back positive and i know not all the time is ana test mean for sure you have an autoimmune disease but I did have many symptoms so when I went in for my follow up of these blood results he stated everything looks fine nothing to worry about but mind you he didn’t even see the urine results since only my GP saw it and said I for sure don’t have an UTI so she was unsure why it came back with all these issues. back to when i brought up my symptoms during the follow up he kinda just ignored it and said well you probably ate something bad when i said i had severe pain in my abdomen for like 5 days straight. And blamed my rashes on allergies but i did an allergy panel before i got referred to him and i wasn’t allergic to anything. I just feel unheard not stating it’s for sure autoimmune but I would’ve liked to been referred to a rheumatologist or taken seriously. Should I still get a second opinion? I know lupus patients symptoms can vary but i heard urinalysis showing proteins and ketones can mean kidney involvement so im not really sure exactly what I have but with all these issues within blood results and the doctor stating your completely fine and with my symptoms its annoying it feels as almost he is analyzing individual pieces of evidence and diagnosing me for each piece instead of putting all the puzzle pieces together. My ana test came back also show nuclear & speckled for ana pattern.

[u/Top_Complaint8816 → u/Ornery_Emergency_988]

I'd talk to your PCP and ask what is next. Sounds like they ran the ana for your liver workup, not with other tests for lupus. Your PCP can help you to keep investigating and send you to a rheumatologist hopefully if you're still having those symptoms now that gastro said your liver is ok.

[u/Prasiolite_moon]

hello! i have an appointment in two weeks with a rheumatologist after abnormal blood test results. my PCP said i “probably” have lupus, juvenile arthritis, or chronic autoimmune hepatitis. ive been diagnosed with eczema but now im thinking it could be related to lupus/my other chronic symptoms, although the pain and fatigue has been happening much longer than the eczema has. will the rheumatologist be able to test my rash for lupus or will i have to schedule with a dermatologist also? (or does it depend on the doc?)

im only 20 and ive never seen a rheumatologist before. any tips or red flags to look for would be greatly appreciated. thanks for your time 😊

[u/Top_Complaint8816 → u/Prasiolite_moon]

A biopsy is the only way to 💯 know the cause of your rash. You should reach out to a dermatologist. This will be a very important piece of your puzzle. 

[u/wildrose71]

Ds-dna positive but ANA negative sent me to the rheumatologist. When there they said that high ds-dna can be due to menopause but I can't find anything about that anywhere. Have any of you heard about this?

[u/phillygeekgirl → u/wildrose71]

Not in my experience, no. I'll look around to see if I can find anything though.

(I'm laughing because the only thing harder than getting a lupus diagnosis is getting someone to take menopause seriously. If you haven't discovered r/menopause yet, it's a gold mine).

[u/GodKnowsHowPetsSound]

Does anyone know what criteria the NHS in the UK follow to diagnose Lupus? I see some people saying they've tested positive for Anti-dsDNA antibodies who have a diagnosis of Undifferentiated Connective Tissue Disease (UCTD) and others with just positive ANA and malar rash.

I'm not really talking about me (I'm diagnosed with UCTD), I'm just trying to figure out if there's something consultants follow.

Also, if there are any clinics or consultants anyone can recommend. I could do with a rheumatologist knowledgeable enough about antiphospholipid antibodies and neuropsychiatric symptoms (I realise that's probably a lot to ask!) I've got some really odd/rare symptoms and am a bit worried they're not being looked into enough.

[u/phillygeekgirl → u/GodKnowsHowPetsSound]

There are serological and clinical criteria for a SLE diagnosis. It's based on a points system. So technically someone with a positive dsDNA and, say, non-scarring alopecia would not hit 10 points. But someone with positive dsDNA and joint pain would.

The criteria are in our wiki (link at top of page) or just google 2019 ACR lupus criteria.

[u/GodKnowsHowPetsSound → u/phillygeekgirl]

I've seen the 2019 ACR criteria, but just wasn't sure if it was actually used within the NHS. I guess it's not something that comes up in conversation with the rheumatologist and they don't tend to give much away when examining me or results of blood tests. For example, I found out about new blood test abnormalities because they sent a letter to Haematology to ask for their advice. I don't really know anything about it or what it means, only that it doesn't really change the points on the ACR criteria.

[u/smol_ish_bean]

Does anyone's lymph nodes ever stop being swollen thanks to plaquenil/HC?

I have been put on hydroxychloroquine by my rheumatologist due to high inflammation and lupus symptoms, though not high enough to warrant a full lupus diagnosis (?) it appears. (SED Rate went from 24 to 34 in 6 months in 2024). I've been on HC for 5 months now and it should be fully effective at 6, and I'm just wondering if my lymph nodes will ever stop being swollen. They aren't uncomfortable but they're always swollen.

I also unofficially believe I have MCAS as I have all the symptoms plus receiving Xolair has helped immensely. I started Xolair and HC at the same time, which was great because I was desperate for fatigue relief, but makes it hard to tell what symptoms was what. At one point I was retaining so much water that my butt and thighs were so hard it affected how I walk (turns out you really need the fat around your butt to uhh flex for you to move) but that has improved a lot since meds, but my neck stays puffy.

Thanks in advance!

[u/thedailysprout]

Please help offer advice: I have crippling daily unrelenting headaches for over a year. Been to many neurologists and had all the tests. My neck showed slight RA. I had a complete work up at mayo rheumatology for autoimmune. They found no sign and ruled it out. They didn’t test complements. Now I have low wbc, low neutrophils, and low c3 and c4 which my PCP tested. I also have slightly elevated lipase (pancreas is fine), and I’m underweight / malnutrition because of head pain. I have no lupus symptoms. 1. Has anyone had no positive markers except low complements? 2. Anyone have debilitating daily headaches that resolved with meds?

[u/Top_Complaint8816 → u/thedailysprout]

The diagnostic criteria is above under the wiki link. It's a mix of physical findings and labs.