r/lupus • u/AutoModerator • 8d ago
UNDIAGNOSED MEGATHREAD Weekly Suspected Lupus Thread - Week Of March 30, 2025
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.
QUESTIONS ARE LIMITED TO 295 WORDS
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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 295 WORDS
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8d ago
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u/Burbs85 Seeking Diagnosis 7d ago
Hi, I had a spiralling moment this week and asked a similar question in a different place and a lovely lady replied this to me, which really helped.
‘The future is here. Nothing will change when you get a diagnosis. You walk into the room with a load of symptoms you’ve been managing and coping with for ages. You leave the office with the same symptoms, a diagnosis and consequently, access to meds.
It’s not falling of a cliff, your body isn’t going to think ‘ah, she has a diagnosis, we’ll make everything worse now’. Nothing will happen. So that future you’re worrying about? It’s how it is now, but with extra info, meds to help, and more knowledge. It becomes so much easier. This is the toughest it gets.
A diagnosis gave me a new lease of life. I wasn’t sleeping 18 hours a day on the weekend, I wasn’t having to sleep as soon as I got in front work. I wasn’t waking up on random days feeling like a truck had hit me. It was amazing! That’s the future.’
Xxx
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u/phillygeekgirl Diagnosed SLE 7d ago
u/HauntingStuff2.
This thread is mostly to answer technical questions about the diagnostic process. Not a whole lot of people respond here to the questions.Your question is basically 'how do I handle stress during a protracted process' and isn't specific to lupus. It's generic enough that it can be asked in subreddits that have more people available for support. Branch out.
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u/ranch_life_1986 Diagnosed with UCTD/MCTD 7d ago
The waiting is so hard! Try to keep your mind busy with listening to audiobooks, a hobby (I like to sew) or something like that. Your results will come back with more info, just try to remember that :)
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u/Remarkable_Jaguar35 Seeking Diagnosis 8d ago
I’ve had my ANA tested twice this month (I’ve been in and out of the hospital this past week and they are not in the same system as my PCP so couldn’t see his test order) and it was negative the second time around. By the time I’d been tested by the hospital, I’d been on 40mg daily of prednisone for a week. I’ve read that prednisone can temporarily lower ANA levels and make the test false.
I’m just so scared my rheumatologist won’t take me seriously and am wondering if other people have encountered this.
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u/sizillian Diagnosed with UCTD/MCTD 8d ago
I’m currently not diagnosed with lupus, but rather UCTD. I’ve had two ana tests; one positive and one negative. Not sure where my rheum will go from there when I see him in six weeks or so.
I take turmeric religiously, actually for my pcos. I just read that it too can lower ana levels but am not sure if my doc would concur.
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u/Remarkable_Jaguar35 Seeking Diagnosis 7d ago
Were you on prednisone when it went negative?
And thanks, I’ll look into turmeric. I’m guessing it can’t hurt at worst. good luck on your journey!
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u/Remarkable_Jaguar35 Seeking Diagnosis 8d ago
Also I’m retracing my medical history (been a wild ride!) and am rethinking even small things. I’ve had false positives for hep b, hep c, and TB at different times in my life. I read that false hep c tests can actually be common with lupus. Anyone else experience this?
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u/SummerCompetitive361 Seeking Diagnosis 5d ago
No but I’ve had multiple false positive HIV tests, which can me a marker for lupus
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8d ago
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u/phillygeekgirl Diagnosed SLE 7d ago
u/Hefty-Panic-7850
This thread is to clarify basic questions about the diagnostic process. We aren't going to evaluate you based on any photographs, and we aren't going to interpret your labs. We can't answer your questions week after week because at this point the answer is always the same.
See. A. Doctor.
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u/Corbel2017 Seeking Diagnosis 7d ago
I suspect my 7 year old son may have lupus. He's chronically had random fevers and muscle/joint pain. His pediatrician associated it with growing pain. I have ulcerative colitis and suspect I may have lupus as well or another chronic illness.
He also has a possible malar rash, but it has been subtle lately. He also experienced livedo reticularis like rashes on arms and thighs, though this could just be temperature related.
Am I over reacting or should I prompt his pediatrician to investigate this? He's only 7 so he hasn't had any blood work done.
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u/ranch_life_1986 Diagnosed with UCTD/MCTD 7d ago
I would ask his doctor (and yours!) for an ANA blood test. Super simple procedure and a good first step!
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u/fish_in_business Seeking Diagnosis 6d ago
I have been down countless paths trying to figure out my chronic pain and illness. Cardiology, neurology, endocrinology, etc. So many tests done. No answers. Recently I stumbled across lupus while trying to do research and figure out WTF is wrong with me. It seemed like it was maybe the answer to all of my ails. I brought up autoimmune testing today at my GP, and instead of even considering going down that path, I was instead diagnosed with fibromyalgia and told there wasn't much I could do about it. Some of the symptoms I've been dealing with: joint pain, muscle pain, bone pain, crushing fatigue, heart palpitations, chest pain, paresthesias, sunlight sensitivity, skin rashes, shortness of breath, flushing, and temperature sensitivity, and chronic headaches. Maybe it's time to give up and accept that it is all in my head? If it is lupus, I'm sure it'll present itself more clearly eventually but for now I guess I have to just deal with the symptoms especially since I can't afford to go to a private rheumatologist without a referral. Thoughts?
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u/CauliflowerAdept1589 Seeking Diagnosis 6d ago
Hi! I'm waiting for my first rheumatologist appointment but until then I'm scratching my head trying to understand. My blood test says I have elevated double stranded DNA antibodies which is why I got referred to a rheumatologist.The results for that marker were 28 iu/ml, doc said it should be maximum 12 iu/ml. It seems to me that yes it's elevated but it's not a crazy number, but I'm not a doctor and I tend to feel like an imposter. Could it be that these number fluctuates and they just happened to not be crazily high when I got my blood test done? I have symptoms and have been having crazy pains since basically forever but its the first time something shows up on a blood test. A family member who had another AI disease told me that test results often fluctuates. Is that correct? How high is Db DNA ab supposed to be related to lupus? Hoping my questions make sense it's all very new to me
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u/SnowySilenc3 Seeking Diagnosis 2d ago edited 2d ago
mood on the imposter syndrome lol
dsdna was positive but titer was only 1:10 (clift test), low c4 but only barely (14, normal range >15), ANA was negative (though I saw a statistic that only ~76% of people with sle have ana positivity on onset)
I’ve been calling it uctd to myself for the time being. (My follow up appointment isn’t until June- with a completely different provider)
From what I know the higher your dsdna test the more likely to be lupus/dsdna is also known to correlate for some people with their level of disease activity (unlike ANAs). Though the specific test used also impacts the specificity too.
Your value of 28 is also technically 2x the lab’s reference range which may add to its validity. https://www.mdcalc.com/calc/10034/slicc-criteria-systemic-lupus-erythematosus-sle-2012
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u/Marigold1331 Seeking Diagnosis 6d ago edited 6d ago
My symptoms: Extreme exhaustion, I’m sick almost all the time, Joint pain, Dry/irritated eyes, Headaches, Raynaud’s syndrome, Slight numbness in my toes, Lymph node swelling and pain, extreme sensitivity to cold, rash on face (faint but there)
I list all of that out only to say that my bloodwork came back fine. I’m sitting on the couch crying right now because I know something is wrong. My doctor said my ANA was fine. Where can I go from here? I really feel like it’s lupus , but should I start looking at other possibilities? Should I push for other tests? I honestly just want to feel normal. I used my Dyson stick vac for about 15 minutes today and I felt like I could pass out from exhaustion by the time I was done. That was after I got 11 hours of sleep last night. It’s seriously affecting my quality of life. It’s not that I want to have lupus. I just really feel like it’s lupus and if I get that diagnosed, then hopefully I could start a treatment plan that will help me live a normal life again. If you read this and have any advice at all, please reply. I never get any replies on this thread. I don’t know where else to turn.
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u/fittobsessed Diagnosed with UCTD/MCTD 4d ago
Hi, I was just recently diagnosed with UCTD after years of symptoms and normal bloodwork so I understand your frustration. Was it your primary care or a rheumatologist that said your ANA was fine? Have you been seen by a rheumatologist at all?
Rheumatology is a very gray science and some autoimmune conditions don’t even require a positive ANA to be diagnosed. Also only a rheum can diagnose rheumatic diseases. Could be possible you have something else autoimmune going on. If it was your primary care that only screened you for a positive ANA and then told you that you’re fine because it was negative then I would search for more answers.
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u/Apollos_Hyacinth Seeking Diagnosis 6d ago
Hi, I wanted to ask for some advice (I’m using reliable online resources too, I just wanted to also hear from people who actually have it).
My partner of five years is looking into a possible lupus diagnosis. We’re at the blood testing stage and they have a family history of it. Nothing is confirmed yet, but signs are pointing towards it and I want to be prepared to help them.
They primarily feel pain in their back, abdomen, hips, and legs. The legs especially-they have a rollator and cane to use as mobility aids. There are days where all they can do is lay in bed in severe pain, relying on muscle relaxers and ibuprofen.
I want to help however I can. We don’t live together yet, but when we are together I try to take care of most physical-related things for them while still allowing them to do it themselves if they want. Especially with moving their mobility aids around when out and about-l’ve taken up weightlifting again to give me better upper body strength for it. I’m also doing it so that when we do live together, I can carry them if need be.
Is there anything I can get them? Like are there certain brands of aids, sun resistant clothes, or self-care products that I should look into? I’ve also read so far that certain foods can aggravate symptoms? Is it different for everyone, or are there certain foods that everyone should avoid?
Thanks in advance for any and all responses. I just want my partner to feel supported.
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u/phillygeekgirl Diagnosed SLE 6d ago
Your partner needs to get up and move. Connective tissue diseases - if that's what they have - worsen considerably when muscle tone is gone. The stress of movement should be supported with muscle, and when that isn't there, the ligaments and tendons take over, which causes pain. Stretching in particular is very important.
Find a PT to help with movement and stretching. That's the best thing you can do for them right now.
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u/Optimistictumbler Seeking Diagnosis 6d ago
My ANA is 1:160 and normal for the lab is considered 1:80.
I have recent joint pain in my feet, erythromelalgia X 6+ months, and cannot go more than 2 hours without desperately having to pee and that is getting worse. I feel terrible overall. Since summer, I’ve also been VERY nearly passing out when I sit with my knees up or lean with my abdomen against the counter. A few times I haven’t brought my knees down or leaned back fast enough and do pass out for several seconds.
I have a chronically suppressed immune system and likely need IVIG to have a functioning immune system, but HMO, so my question is this. Since my ESR and rheumetoid factor antibodies are normal/absent, can lupus be reliably ruled out?
I’ve lived in my body my entire life and I have a feeling like something is really wrong, I just don’t know what it is. I’ve dealt with my share of serious health issues in my lifetime and I don’t panic. This feels like a gut instinct, something isn’t right. Drug induced lupus runs in my family and I take atenolol.
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u/SnowySilenc3 Seeking Diagnosis 2d ago
have you had any other antibodies tested or just ANA and rheumatoid factor?
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u/Healthcareworker1 Seeking Diagnosis 6d ago
I am almost 10 months postpartum and I have been having some joint pain and stiffness for the past 3 weeks. Extreme fatigue since I got my cycle back at 5 months pp. Along with some paresthesia… not sure what that symptoms about. I’ve had weird rashes on and off for years. Diagnosed rosacea. Raynaud’s phenomenon. But now with the new joint pain and stiffness I decided to bring it up with my doctor. I’m getting some blood drawn to figure out what’s going on. Came to this page early just for some guidance and knowledge about lupus. I suspect maybe it could be RA or SLE. I had to be induced for my first pregnancy in 2024 for high blood pressure. Liver and kidney functions were lower. No prior issues with this before pregnancy. I took a few weeks for my leg swelling to go down after birth as well. Now I’m wondering if it was lupus all along.
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6d ago
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u/Depraysie Seeking Diagnosis 6d ago
Hey!
I was diagnosed with UCTD by my ENT after she became alarmed by my symptoms. My ANA has tested mildly positive once, right before what I considered a flare-up, but my ENA and subsequent ANA tests have been negative when I felt better. Since lupus runs in my family and I’ve had significant systemic symptoms (especially GI and neurological), my ENT urged me to find a Rheumatologist who would take me seriously. My first one dismissed me because I “looked healthy.”
The second Rheumatologist took me seriously after a terrifying flare-up. About 24 hours after intense emotional stress, I woke up drenched in sweat, with a fever (100.5–101°F), severe neck pain (bone-deep, not muscular), and expressive aphasia—I couldn’t speak properly. At the ER, the doctor refused to run my pre-ordered blood tests, did only basic labs, and dismissed it as anxiety, telling me to take Tylenol and benzos. My parents took me to another doctor, who immediately started me on steroids, and I improved over a few days. But I feel like I missed my chance to confirm what autoimmune condition I have.
Now, my Rheumatologist has ordered extensive labs, saying if they’re negative, she’ll refer me to Neurology. I don’t want to miss my chance again, but I’m terrified of another flare-up. It’s been 1.5 months, and I’ve been sick on and off, but that has never been enough to get positive results. The positive ANA happened right before a major flare-up.
When should I take the test? How do I ensure I get an answer? I’m scared of getting lost in the system, untreated, and bouncing between doctors. Please help.
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u/phillygeekgirl Diagnosed SLE 6d ago edited 6d ago
There is a process to getting diagnosed. Trying to shortcut it with the ER is not going to be effective, as you've seen. It is not the place to have preordered labs run. The ER is for stabilizing life threatening situations. They will always make sure that you are safe, then discharge you for further evaluation and follow up with your GP and relevant specialist if needed.
Positive ANA is not enough serology to make a UCTD diagnosis, particularly from an ENT. If you are having neurological symptoms caused by lupus, your bloodwork is not going to be negative. Central nervous symptom involvement is not subtle, serologically speaking.
If your bloodwork comes back negative, it doesn't mean you missed your chance, that you're being brushed off for your age or that you're being dismissed, it means you don't have lupus. Neurology is a logical next step after rheum. Good luck.1
u/Depraysie Seeking Diagnosis 6d ago
Thank you for your reply!
I’m having a lot more symptoms that I didn’t have enough space to write haha, but both my ENT and Rheumatologist said it usually takes a while from the beginning of the first symptoms until bloodwork comes back positive. They said it’s a matter of retesting every 6 months until it shows up. They agreed it’s autoimmune related but we just don’t know what it is right now. All my relatives with LES and RA had that happen too. I’m not having terrible neurological symptoms apart from the big bad instances that were quickly solved with steroids, so when I took the previous tests I was neurologically okay. I do agree that the next step should be Neurology, I’m just scared whatever it is is gonna take so long to diagnose I end up with irreversible damage. Thanks again for taking the time to reply :)
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u/MiddleKlutzy8568 Seeking Diagnosis 5d ago
I have had a positive ANA and a high CRP. I’m previously dx with Ehlers Danlos, IBS, POTs etc. My doctor put me on Hydroxychloroquine, I was expecting it to not work for 3 months but after 1 week it’s reset my digestion and my ankles and knees aren’t swollen! I’m worried I’m getting my hopes up. Has anyone else experienced quick relief, does it last?
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u/Just_Wanna_Fish Seeking Diagnosis 5d ago
Hello… We are the parents of a beautiful 14 year-old girl. Her blood work came back pointing towards lupus and we have an appointment with a pediatric rheumatologist next week. We have not told our daughter anything at all because we don’t want to terrify her but at the same time, we don’t want her to be completely blindsided in the doctors appointment. Basically looking for advice from other parents as to how you broke the news to your child and if you did so ahead of time of the first major appointment… Or if you let the doctor break the news as I’m sure it’s something they deal with all the time with children. Thanks so much.
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u/phillygeekgirl Diagnosed SLE 5d ago edited 5d ago
Kids are going to take their cues from you. Don't freak out about it and she won't. Explain that diseases have a wide variety of presentations where some people have it mildly and some more severely.
She's going to google it; try to limit her social media because there's all kinds of chronic illness influencers that make their disease their entire identity.
Talk to her about social media algorithms - once you follow/view one sickfluencer account, her feed will be inundated with them. Then every time she looks at social media she's pummeled with OMG LUPUS and that's how you torpedo your mental health.
Don't make it a huge deal. It's just a disease. It's manageable. Everyone gets something eventually, this is just the thing she gets.
Let me know if you need anything else.
Edit: Also, this doesn't mean college or career are torpedoed either. SLE is covered by the ADA so she will register with school to get accommodations if needed. Set it up ahead of time, at the start of the school year, not after a failed exam. :)
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u/Nalaboo89 Diagnosed SLE 5d ago
Hello all- I'm suspected to have lupus with two other AI diseases. I've had positive ssdna markers along with ana. Any thoughts on the ssdna markers? Also, I've noticed white scaly raised patches on my face. They're lighter than the rest of my skin. They don't itch or hurt, but they're there. Anyone have experience with this?
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u/fish_in_business Seeking Diagnosis 5d ago
Just got diagnosed with fibromyalgia. Still suspecting lupus or another rheum autoimmune disorder. Symptoms are joint and muscle pain, fatigue, headaches, chest pain, shortness of breath, paresthesias, sickness after sun exposure (no photosensitive rash though), rashes on body, oligomenorrhea, malaise, and swollen lymph nodes, and reactive hypoglycemia. Hormonal panels, including TSH, were normal. CBC was normal except for slightly high WBC, and slightly low hemoglobin, hematocrit, and mean cell HGB concentration. Doc refused to do ANA testing because she said it wasn't indicated despite all of my symptoms, which may indeed be the case from her standpoint as a doctor. I just feel like there is more to investigate before landing on fibro as the culprit. What can I do to keep advocating for myself? Based on what I've listed, does it even sound like it's worth continuing to look into lupus as a potential cause? Also, for those of you who have been diagnosed with fibromyalgia, did it negatively impact your ability to get diagnosed with lupus and cause doctors to not take you as seriously? Thanks and take care.
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5d ago
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u/AutoModerator 5d ago
/u/Spider710 Your question was removed because diagnosis questions are limited to 295 words.
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Note: Editing your removed post won't approve it, you need to re-submit it.Question guidance - * Don't ask us if you have lupus, if it sounds like you have lupus, or if we think you have lupus.
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u/SummerCompetitive361 Seeking Diagnosis 5d ago edited 5d ago
Hey y’all, I’ve been experiencing weight loss, hair loss, fatigue, muscle tenderness, burning skin sensations, nausea, some GI symptoms, petechiae on my legs, cold palms and feet, some dry coughing, headaches, and cracking joints. I had an ultrasound yesterday to identify the source of some abdominal pain and the radiologist said my kidneys were inflamed. I’ve been having some muscle twitches, facial weakness, and muscle weakness for the past year but the new symptoms appeared after I drank a smoothie with spirulina, which apparently is an autoimmune trigger.
I’ve also had multiple false positive HIV tests, which apparently is common in lupus patients. It’s so odd because sometimes symptoms will appear for a few hours, next day I’m fine, and then the next day I feel sick to my stomach or weak as hell with cracking joints and fatigue. TSH levels are also low but with normal T4. Urinalysis showed protein, RBC, and casts in my urine.
The muscle weakness and coordination issues and facial weakness have been extremely frustrating since they started last year too. Woke up one morning feeling exhausted and the right side of my body feeling weak. It’s improved a lot but have never felt the same since. Can anyone relate to these symptoms or offer their take? Going back to PCP next week to investigate kidney issue
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u/anonym5088 Seeking Diagnosis 4d ago
Has anyone been misdiagnosed with me/cfs but actually has lupus? I have butterfly rash in my face and a few other symptoms that aren’t related to me/cfs. I’m suspecting lupus. I haven’t taken the ANA tests but my kidney function is perfect and same with rheumatoid factor and red and white blood cells etc. I’m almost completely bed bound. I’m very sick I’m sorry I can’t include more details.
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u/minniejh Diagnosed with UCTD/MCTD 4d ago
This is such an odd question but it came up in my rheum appointment yesterday. I had a positive ANA in October following a slew of issues and my rheum diagnosed me with UCTD. We re-ran my ANA as part of a myositis panel and now ANA is negative; my rheum said this indicates lower likelihood of lupus? Is this accurate? Or can ANA fluctuate? My other labs have improved following 3.5 months of HCQ.
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u/adorkable-lesbian Seeking Diagnosis 4d ago
I’ve been looking for answers for 9 years. My ANA originally came back negative but then they tested it a different way after seeing a rheumatologist and now it’s positive. One of my anti-cardiolipin tests also came back abnormal which scares me because of my family history of strokes. Now I’m off to go get the anti-dsDNA and anti-SM and more panels done. I am both excited and terrified and just looking for advice on how to manage medical anxiety while I wait for test results and diagnosis.
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u/adorkable-lesbian Seeking Diagnosis 2d ago
Update to this- ANA and anti-dsDNA are positive and my doctor messaged me this morning to move my appointment to Monday to discuss test results as they’re “highly suggestive of lupus”. I’m so nervous to go in on Monday. Any tips or advice on what to expect for this appointment?
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u/IrritableSandwich Seeking Diagnosis 4d ago
Any tips for rash biopsy? I was referred by rheumatologist to dermatologist for a biopsy of my rashes. I get urticaria on my legs/arms and I get a red burning rash on my cheeks/nose. The problem is nothing specific triggers them and they usually only last about an hour. Any tips for “triggering” a rash for a biopsy? Or what to do if I can’t for the dermatologist?
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u/chroniclesofpotatoes Seeking Diagnosis 4d ago
can someone explain the T cell results from AVISE? i’m confused. why are the t cell biomarkers not included in the lupus index? are they not specific to lupus? what do they mean?
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u/cyclione Seeking Diagnosis 4d ago
I hope it is okay for me to ask this here despite it not being a query regarding the diagnostic process: Tips for writing during unbearable hand flare?
NOTE: If there is a better subreddit to be asking this question in, or if I am breaking any subreddit rules, please inform me and I will redirect my question.
*To be clear, I am not diagnosed with a specific connective tissue disease at this moment, but doctor suspects SLE or MCTD. I apologize for posting this in this thread, if this is not appropriate. Specific results and evaluation of which condition from my rheumatologist will only be available to me in a few days, but I desperately need to study and take notes for upcoming exams. Non-rheum doctor wants me to start steroids imminently but unfortunately I cannot until the rheumatologist has given a diagnosis.
This has made my situation quite difficult as I have been suffering from symptoms and arthritic pain for these weeks quite severely, and recently I have noticed my dominant hand becoming deformed from use & has completely changed appearance, with increasing pain, inflammation and inflexibility. I have tried what I have heard of, including heat and cold packs, stretches, changing pencil grips and etc but it is still very painful. However, as a full-time student with upcoming exams, it would be great to hear if anyone has specific tips or advice on dealing with this type of situation, or what may have personally worked for you in terms of stretches, hand exercises, pencil/pens , seating and writing positions etc. Thank you very much, and I am sorry to mods if this is an inappropriately placed question or if I have missed any rules.
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u/Electronic-Tea3354 Seeking Diagnosis 3d ago
Undiagnosed - amidst testing
How do your exposed skin rashes come on after UV exposure? Do they just show up right away, overnight, or can you watch them slowly forming over the course of a few days/weeks? What do they look like during the process, if so?
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u/adorkable-lesbian Seeking Diagnosis 2d ago
Also undiagnosed and doing testing and wondering the same thing! For me, my arms break out in what looks like pimples but they aren’t. They’ve occasionally scarred. I used to think it was a reaction to sunscreen but I get it even when I don’t use sunscreen. It usually appears in the next two days as bumps on both arms. I also get super fatigued after being in the sun and if I get sunburned I feel like I have the flu.
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u/Appropriate-Wait939 Seeking Diagnosis 3d ago
Hello, My symptoms for 2+ years
-Arthritic pain and swelling in hands and feet, sometimes also in my elbows -What appears to maybe be a malar rash. My primary doctor has referred me to a rheum but I haven't seen them yet. -Scalloped and geographic tongue, constant dry mouth -fevers that coincide with these symptoms There may be others that I have missed but these are the ones that stick out.
My PCP did a CBC and included a rheumatoid factor test. The RF test was normal. Has anyone experienced a negative RF result but diagnosed with SLE?
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u/fittobsessed Diagnosed with UCTD/MCTD 2d ago
The RF isn't specific to lupus. The RF is usually associated with rheumatoid arthritis but in general it has a low specificity, meaning it doesn't have a high rate of pointing directly to a specific autoimmune disease. It can definitely be negative in someone with lupus. You should check out the American College of Rheumatology guidelines for SLE diagnosis. It's linked in the post intro above. A score of 10+ meets the criteria.
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u/adorkable-lesbian Seeking Diagnosis 2d ago
Also seeking diagnosis! My RF factor was negative but on the same test I was positive for anti-carP antibodies. That and my joint pain led to a referral to the rheumatologist where I was positive for ANA and anti-dsDNA. My appointment was moved up to Monday so I can get a diagnosis and start treatment.
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u/Appropriate-Wait939 Seeking Diagnosis 2d ago
Congrats on getting treatment!
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u/adorkable-lesbian Seeking Diagnosis 2d ago
Thanks! I’ve been going at this for 9 years so I’m kind of in denial that Monday might be the end of the diagnosis journey and the start of treatment. I’m low key convinced they’re going to tell me it’s my mental health again haha.
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u/Appropriate-Wait939 Seeking Diagnosis 2d ago
I just got my ANA results which my PCP ordered- negative. It said something about the nuclear ANA not always being accurate, but my SED is quite high and I have most lupus symptoms. I am tired of feeling like crap.
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u/adorkable-lesbian Seeking Diagnosis 2d ago
I originally came back with a negative ANA with the ANA, IgG by ELISA test and then came back 1:320, homogenous with the ANA with HEp-2 substrate test. They were taken a few months apart. My SED and CRP were also high. The ANA by ELISA test also said something about not being the most accurate so it could be worth a retest using a different test.
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u/whoever-threw-that- Seeking Diagnosis 3d ago
Been unwell for awhile, diagnosed fibromyalgia in 2018 (7 years ago ugh). We’ve suspected EDS and POTS. I have (from what I understand) classic lupus symptoms. Butterfly rash after sun and/or heat, moderate hair loss, blood pooling, mottled skin, raynauds(not yet diagnosed), seizure like episodes, joint pain, and probably something else I am forgetting. We tested me for lupus Dec 2023, I had inconclusive dsDNA, a high but normal sedimentation rate, an abnormal c reactive protein, and a negative ANA. During a recent visit we decided to retest due to the inconclusive, since I have been having a bad flare (but I’m afraid the flare ended before the test was done). So far all the tests are coming back normal even though I was seemingly in a flare. Does it end here? I have an appointment with a proper rheumatologist to schedule. I’m just afraid I have lupus and we’ll never find out. Or I have something else and we aren’t looking in the right place. I feel so discouraged. Has anyone else had similar issues being diagnosed, do I press for lupus retesting, do I look for another answer? Help
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u/fittobsessed Diagnosed with UCTD/MCTD 2d ago
Rheumatology is so strange which is why I always tell people to go to a rheumatologists to be diagnosed with rheumatic diseases. During my diagnosis journey I was told by multiple other specialists that my symptoms were not rheumatic and my bloodwork was fine. When I went to a rheumatologist they said the complete opposite. It could be that its too early to clearly diagnose anything autoimmune or that its something else but bloodwork can always change so I think its worth trying.
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u/phillygeekgirl Diagnosed SLE 1d ago
Thank you! We get tons of people who say their GP/ENT/derm/chiro/whatever told them they have lupus.
Part of it is interpretation; I think some patients are told "you need to get looked at to see if this maybe could be lupus" and they hear "you have lupus".But some are definitely led astray by "positive ANA omg lupus". It's a source of endless correction here in the sub. And many users hear our corrections and interpret it as "r/lupus is a bunch of gaslighting gatekeepers".
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u/adorkable-lesbian Seeking Diagnosis 2d ago
Hi! I was in the same spot with my IBS. I thought I had Crohn’s disease but testing was going no where. I got referred to a rheumatologist for the joint pain that accompanied my primarily GI symptoms and the testing from the rheumatologist is “highly suggestive” of Lupus. So many of these autoimmune conditions have overlapping symptoms. I found the rheumatologist to be the most thorough doctor I’ve ever seen. If you’re going to see one they might be able to suggest testing for alternate conditions.
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u/lucaletti Seeking Diagnosis 3d ago edited 3d ago
I have been dealing with random rashes (appear for a few days - a week and then disappear), debilitating fatigue, inflamed liver/spleen issues, bladder issues and hair loss on and off for 10 years. It comes and goes, but fatigue and brain fog are constant.
I have been tested and am waiting on interpretation:
ANA IFA: 1:320 homogenous
DsDNA ELISA: 15 (>9 positive)
DsDNA CLIFT: negative
C3 complement: 89 (<86 abnormal)
I am thrown off by the DsDNA positive and negative - I assume my ELISA is a false positive? If so, is my ANA significant at all? Any insight would be greatly appreciated.
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u/SnowySilenc3 Seeking Diagnosis 2d ago edited 2d ago
The first dsdna test is more for low and medium affinity antibodies while the clift tests high affinity antibodies. From what I know the Elisa is more sensitive and the clift is more specific. I wouldn’t say this makes it a false positive though. You probably have to wait for your follow up to see what the doc says.
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u/CriticismCautious711 Seeking Diagnosis 1d ago
F 24, Struggled with INTENSE fatigue & brain fog, GI problems, skin rashes (including malar), cold extremities, Raynard’s, easy bruising, insomnia, occasional joint pain, unintentional weight loss, persistent swollen lymph nodes. Symptoms would come and go, not necessarily be there at the same time.
Tested extreme low Vitamin D, past Ebv, low IgE, and ANA positive, RNP positive.
Went to Rheumatologist 3 months later ANA & all relevant autoimmune tests came back negative. But my symptoms continued and worsened at times.
My PCP suspects lupus/autoimmune something based on symptoms and past positive ANA. She re ran some routine labs this past week and found my creative was elevated (1.3) and my eGFR had significantly lowered compared to all past blood work (64 down from around 120). She further suspects lupus & now says there is possible kidney involvement. I have an appointment with another rheumatologist on Monday but just wondering thoughts? I’ve felt miserable for the past year with all kinds of symptoms along with a bunch of other little things, it’s just always something. Thoughts?
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u/newlovehomebaby Seeking Diagnosis 1d ago edited 1d ago
My (mid 30s woman) face skin, which prior to this has been unremarkable and low maintenence skin wise, lost its damn mind about...6 weeks ago? Persistent redness, the red areas are very very dry and get flaky as the day wears on. No acne, though there are a few red spots from me picking at the flakes (which I shouldnt). It isn't itchy or painful.
I have a dr appointment this week (annual physical-but -will be bringing up this and: diarrhea, weight loss, exhaustion, new onset menstrual issues, kidney issues noted in multiple urgent care visits for other unrelated things, other stuff). Unsure if this is malar rash or something else? Whatever it is-is stubborn. I've tried switching products, exfoliating, deep moisturizing, humidifiers in my home and office, different pillowcases, various combos of all these things. It literally looks the same no matter what I do. What the hell is going on? (Rhetorical, I guess.I know no one's gonna diagnose me)
Also pictured: my Sahara desert peeling lips, no matter how much water I chug
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u/Inaponthursdays Seeking Diagnosis 8d ago
Chronic body wide issues for 8 years- multiple doctors no answers (frequent infections, rashes, petechiae, joint pain and visible swelling, photosensitive, maximum fatigue, hair loss) So disabled by it I had to take a medical leave.
Finally a doctor ran an ANA test (3months ago) and it came back positive speckled 1:80-(low I know).
Lymph node swelled up by my ear and dentist noted I have dry mouth and geographic tongue.
Was referred to rheum.
Saw rheum- who asked about my sleep and I answered its fine but I survived an earthquake a year ago and sometimes get nightmares. Told me he was going to send me for repeat ANA and urinalysis.
Requisition forms in hand, drove home to find a note “fibromyalgia” in my file.
Did the tests, and I had significant blood in my urine, and not only did my ANA speckled remain but now have Homogenous as well 1:80.
Fainted and saw gp, sent to cardiologist- SVT on ECG. 24 hour monitor- results pending. WBC dropped in a single week from fairly high to bottom number on the normal reference range. Neutrophils too. Magnesium and potassium low. Supplemented. Potassium recovered and magnesium did not. Borderline high creatinine in urine.
Radio silence from Rheum. Called for a week and no answer. Finally spoke with receptionist and she said the doctor told her not to book a follow up. I told her my labs are no bueno and I need him to follow up. She refused because he did.
What do I do now? Where do I go from here?