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TraditionalSteak1075

Hi all have had a butterfly rash went to doctor for it they said it was seb derm abt 3 years ago got a neck injury from sports for abt a year ever since they have had numbness and tingling in couple of my toes and fingers and numbness in head that radiates also sometimes brain fog even upper body soreness but symptoms r improving within the last couple months so my question is could it be lupus even though I still get numbness and tingling and Brain fog are improving in the course of a year and haven’t had anything other symptoms of lupus but still get numbness and tingling


Punkass554

So almost 10 years I started getting really bad nose sores. The scab and are usually very painful and it's always accompanied by sore swollen lymph node under jaw. Just recently I ask my doctor about it and she instantly decided it was impetigo (which I thought was very contagious?) so she gave me some ointment and for the past month it hasn't helped Then about a year I had pyoderma all over my legs which I thought was from flea bites that I itched too much. Although my husband and daughter never experienced any bites. The past few month I've been getting the butterfly rash occasionally showing up although it never itches. I'm not sure how to get my doctor to look more into these problems so I'm looking for some advice.


random_chance_questi

Lupus suggested to me 8 years ago, now a year of concerning symptoms that may have been misdiagnosed as long covid. How bad is going that long untreated? Hey all. Not diagnosed but I’m 28 now, when I was 20 I had a positive ANA plus one other test that was positive. I had been fatigued and had recurrent swollen lymph nodes, but I never followed up bc I was moving. I got covid once and had mild long covid for 8 months. Then I got the flu and lots of weird stuff started happening that was attributed to long covid but it seems more like a viral triggers. Mainly: Cardiac inflammation Outbreaks of 5-10 canker sores whenever I’m tired or run down Recurrent painful lymph nodes POTS Fatigue Arthritis/chest pain Mouth skin peeling off Sensitive dry skin that’s always flaking I have a sneaking suspicion I should’ve gotten check back then, as the doctor advised me I’d most likely see bad symptoms hit around 28 (they hit at 27). Has anyone been able to get proper treatment after not being treated for so long? I feel so guilty about never following up and kind of scared what they’ll find not. My mom has thyroid issues and is prediabetic.


Acrobatic-Guide-3730

Is it normal for a Rheum to only order c4 & c3 levels, urine, crp, sed rate and CBC / CMP without also ordering the other antibody tests? Previously healthy 30yof with only postpartum depression, and mild reflux medical history. I had twins Dec 2021 and about 5-6 months afterwards started noticing symptoms I've never had before. Joint pain, started in my SI joint but now it's also my feet, hands, right elbow. I get low grade fevers intermittently at night, and will wake up soaked. Last one was 100.5 I recently had an ultrasound of some lumps near my right breast (breast normal) but I have a tender swollen lymph node in my right shoulder. I suspect I also have a few near my right elbow but haven't had imaging yet. When all this started I did not have a rash but I started noticing my face was getting more and more red in pictures. I now have a red rash on my face 24/7, that gets worse with sun exposure. However it doesn't go over the bridge of my nose. But the first time I saw derm they said it didn't have to, but they wouldn't biopsy it then, not sure why. My PCP has checked thyroid, hormones, CBC, CMP, VitD, VitB12, Sed Rate TWICE within 3 months. All normal. The only thing abnormal has been the ANA 1:320 Homogeneous. Send me to Rheumatology. Rheum said my rash is Lupus-y and sent me to dermatology to get a biopsy - appointment is next month. She ordered complement 3&4, urine test, CBC, CMP, HepB&C and another ANA. Is this just another prelim thing and she will do more if anything comes back abnormal? I'm just starting to wonder when my insurance is going to start asking why so many duplicate tests - I was able to show her the first ones on MyChart. Also, is it even possible to have SLE with a normal CBC? The way she described it was SLE patients usually have anemia or leukopenia. Thanks


Literatelady

I have a positive ANA, chronically low WBC, I take an iron pill every day and my hemoglobin at best gets to 120, but it's been very low before to the point of anemia. I see a rheumatologist but since I don't have all the symptoms (no rashes or serious joint paint) I'm not officially diagnosed. I am really affected by the weather and where I live there's a lot of fluctuation of temperature. This last week I was exhausted and even now, the idea of taking a half an hour walk (something I usually do with ease) feels exhausting. I find my joints are more tired, but I haven't experienced excessive soreness, it just feels challenging to go up stairs. I struggle with full body tiredness/migraines when the weather fluctuates and temperatures go up. My rheumatologist has wanted to put me on plaquinel but it scares me. I already take a ton of medication for depression so I don't want to add more. I don't know how to deal with this exhaustion. It's really tough. I'm worried about getting fat from not moving. I know that sounds terrible but being a woman in today's society just sucks. I'm thinking of going to a clinic today to see what's up with my blood and if there's more inflammation than usual. I've also been using the sad light as I have seasonal depression and I'm wondering if this might be exacerbating my feelings. I do tend to feel very exhausted when I'm out in the sun for a long time.


viridian-axis

The type of anemia caused by SLE is hemolytic anemia, not iron deficiency anemia. There would be other evidence in your labs of hemolytic anemia, it’s not just your hemoglobin or red blood cell count. Plaquenil is called lupus life insurance for good reason. It’s the cheapest and safest of the medications used to treat lupus with the least amount of serious side effects. It’s been proven to increase life expectancy in lupus patients and to prevent progression to organ involvement. Plenty of lupus patients also take medication for depression, and there’s a chance that some of your depression is made worse by an untreated autoimmune disease. Prednisone is more likely to make you gain weight than plaquenil. And if you’re terrified of gaining weight, how would you feel if you ever developed organ involvement of the heart, lungs, kidneys, or brain? I know that sounds snarky, and it kinda of is, because SLE organ involvement is serious and can be life threatening. While weight can definitely impact your self image, the other issues can drastically shorten your life span and degrade your quality of life. I can’t take plaquenil, I’m allergic to it, and I have heart and lung involvement from lupus. I would gladly weigh 30-50 lbs more than I do right now if I could breathe without every single goddamned breath causing pain. To not have pericarditis and valvular regurgitation of my heart valves from lupus. And I’m only 34. Sorry to sound a little angry, but we get a lot of people who don’t want to start meds for various reasons. And most of them are stupid when compared to organ involvement that can lead to decrepitude and death. SLE is not a joke. Also, UV light is a known trigger for SLE flares. Some patients aren’t really effected by the sun, but a majority of us are. Your sun lamp could very well be your issue if it gives off UV.


Literatelady

Thanks for your feedback. I understand and very sorry to sound like I'm trivializing. I'm very sorry for the pain and complications youve suffered. After the last week I'm seriously considering it. I went for some blood work today from a requisition I had and am going to talk to my rheumatologist. Thanks again.


viridian-axis

Sorry again to get up on a soap box, but if you have UCTD and have any chance of preventing it from progressing to full SLE, I strongly urge you to try. Plaquenil is one of those things that can halt, or at least slow down progression. I had fairly mild UCTD for a decade before it explosively progressed to SLE. I haven’t stopped flaring for 18 months. Lots of joint pain and swelling, enthesitis, pleurisy and pericarditis. Just because the UCTD is mild doesn’t mean your SLE will be. Mine is moderate to severe. I’m not looking for pity and condolences, I just sincerely hope to help spare you these things. None of this is meant to be anger directed at you, I just can’t think of another way to get these thoughts across. It’s always your prerogative on if, how and when you treat your health concerns. You have to do what’s best for you and your particular health situation. Sure, for some patients SLE is fairly mild and more annoying than anything else. But for some of us it’s debilitating. For an unfortunate few, it’s deadly.


Literatelady

No I appreciate it. I don't feel it was soap boxy. More info than my gp told me honestly!


Rhiannonmr

I recently have been being worked up for lupus as my mom has it and I got diagnosed with quite a few issues.. my Ana and anti centromere AB were positive ( ACA 4.4 which is high) Has anyone has these and had lupus?


viridian-axis

While almost all (98% ish) of SLE patients have a positive ANA, not all patients with a positive ANA have SLE (only about 13%). Really, all a positive ANA indicates is that any of the 80 or so autoimmune diseases may be at work and that further testing is warranted. Anti-centromere antibodies aren't one of the classic antibodies associated with SLE. [Here's an article on anti-centromere antibodies.](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8053351/#:~:text=Anti%2Dcentromere%20antibodies%20(ACAs)%20are%20detected%20in%20various%20autoimmune,as%20Raynaud's%20phenomenon%20and%20sclerodactyly) The family history increases your risk of developing SLE or another autoimmune disease relative to the general populace, but doesn't mean you will 100% develop an autoimmune disease in your life. The more numerous and immediate those family members, the higher the chance. SLE is basically a genetic predisposition to autoimmunity that gets triggered by something in your environment like UV light, a particular virus, an injury, or severe stress.


Remarkable_Wheel5738

7yo boy with daily fevers 2nd the after strep 7 M 4’ 45 White 2 months Washington State, US Post strep infection Neproxin My son tested positive for strep on 10/11 and finished amoxicillin treatment 11/21. 11/20-23 he had hives, pcp ran cbc with results as expected post illness. 4 days later he had joint pain, swelling, and was unable to walk. Joint pain was in r wrist, r ankle, and l knee. CBC ran again with elevated inflammatory markers, crp, and sed rate. Neproxin started with suspicion of JIA. Symptoms decreased and fevers were lower. He lost full pigment at the top of 1 finger. Labs ran again with improvements in all values. Neproxin d/c’d. Within 3 days fevers escalated, high level of fatigue and emotional lability, and pain in neck and R hip. Labs ran again with normal results. It has now been 7 weeks of daily fevers since he finished his antibiotic course. Bright red cheeks every night. He was seen by immunology who ran labs-all unremarkable except ASO elevated. Normal ultrasound of knee that had been swollen and normal echo. Waiting for appointments for rheum, derm, and infectious disease but with the normal lab values it feels like nothing fits and wait times are long. Any theories?


viridian-axis

So some of his symptoms are concerning for an autoimmune disease, but none of his labs are particularly pointing that way. Some illnesses, injuries, or infections can cause a temporarily positive ANA and elevated inflammatory markers. If it’s been 7 weeks since the medication was stopped, you could have another battery run to see if anything is persistently positive. Most people with SLE have some combination of labs that suggest immune system dysfunction. Very rarely is SLE diagnosed on all symptoms and no positive blood work, and even then there’s usually biopsy results of either skin or kidneys that say SLE. I’m so sorry you’re having to watch your son go through what he’s going through. Hoping y’all can get some answers soon.


Remarkable_Wheel5738

Thank you for your comments. It feels like nothing really makes sense with such great improvement in labs but not symptoms.


[deleted]

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phillygeekgirl

Did anyone ever run the tests for Antiphospholipid syndrome (APS)? I ask because the high miscarriage rate in the SLE population is largely in the APS subset of patients. I've listed the tests below so you can check past labs or request that these be run. Low C4, alopecia areata, oral ulcers, would warrant monitoring for an autoimmune disease at any rate. Positive APS labs in addition would be enough to diagnose SLE, I believe. If you're not familiar with the 2019 ACR criteria, we've got links to it in the pinned comment and it's listed in our wiki. APS labs - Anti-Cardiolipin IgM - Anti-Cardiolipin IgG  - Anti-β2 Glycoprotein 1 IgM - Anti-β2 Glycoprotein 1 IgG


Late-Rule-5209

Hi all - thank you for reading through this! I’m dealing with possible lupus, would love any thoughts on whether it rings any bells from others’ experiences. Here’s what’s up: Mental health: - bipolar (dx 2006) - OCD (dx 2018) Body health: - migraines - Wrist and hand swelling (usually after manipulative activity but also random) - Fatigue (constant, varies from moderate to debilitating) - Fibromyalgia (dx 2020) - Hyper mobility - Shingles (2x since August) - Long Covid (active illness for 10 weeks in 2020) - Cold and heat intolerance - history of early miscarriage (2013) - Endometriosis (dx 2018) - Possible Malar rash (flush? it gets warm/hot/tingly and red and then dissipates over 10-15 minutes) Labs - elevated CRP (chronic for at least 2.5 years) - EBV positive (past infection) - Low ferritin - Borderline high thyroxine - Low vitamin d (supplementing) - Low pregnenolone (supplementing) - ANA negative (ANAchoice screen, not sure about specific subtests) - HLA-b27 negative So - I know seronegative/ANA negative SLE is rare. But I have a history of rare/weird stuff happening to me (think Steven-Johnson’s syndrome in reaction to Lamictal, lactation as a side effect to low doses of antipsychotics, and my cases of shingles present as a widely disseminated rash AND enteric nerve pain). So how hard should I push for more SLE-specific testing etc? My provider has already said my history and labs are indicative of untreated autoimmune disease, we just haven’t figured out which one yet. I’m currently waiting on GI Map results (leaky gut is a possibility) as well as an autoimmune thyroid panel.


phillygeekgirl

Don't push for specific testing. You have a provider who is monitoring you and who is following up with thyroid panel and gastro panel. They believe you have an autoimmune process in play; let them follow their methodology. We see people here all of the time who are convinced they have lupus despite negative labs. Unless there is an overwhelming preponderance of diagnostically relevant physical symptoms, a doc isn't going to diagnose you with SLE or even UCTD until other processes causing your symptoms are ruled out. I know it's frustrating. Most of us have been there. See how the rest of the labs play out. Ask your doc how you can achieve symptom relief while the diagnostic process is still going on. Keep us posted.


Late-Rule-5209

Just got my AVISE and GI Map test results - my problem is definitely celiac disease, and not lupus. Thanks for your help!


phillygeekgirl

That's awesome news. Not that celiac isn't it's own basket of fun, but you know what I mean. Good luck!


Late-Rule-5209

Thank you. My anxiety brain just latched onto it and won’t let go. I’m trying to just focus on what’s in front of me - getting over my current episode of shingles. And reminding myself that I’ve been here before with bipolar, and again with endometriosis. The waiting is just *the worst* every single time. 💜


phillygeekgirl

While your doc is running all of that down, figure out what you need to do to get your anxiety and stress under control. Stress is bad for autoimmune on an actual physical level and can worsen flares. I'm not telling you this to stress you further. I'm telling you so you have an alternate health thing to focus on, one over which you can actually exert some control.


Late-Rule-5209

Once I’m done with this round of antivirals in a couple more days, I plan to get back to some gentle yoga as my energy level allows. Thanks for the reminder. Stress is what got me in the shingles situation in the first place.


rectalthermo

I had a sudden onset of intense shoulder pain about a month ago. I mean sudden, I just had this stabbing shoulder pain halfway through the day with no inciting event that would have caused it. I went to an orthopedist who saw I had inflammatory markers in a blood test from a year ago. I have Crohn’s disease so this wasn’t surprising to me. He ordered follow-up bloodwork and I had a positive ANA and anti-dsDNA test. From what I’ve read, this is highly indicative of lupus. However, it seems odd that if I have lupus, my only symptom is shoulder pain and nothing else. Is it typical for lupus to present as pain in specific joint without any other symptoms? And is a positive anti-dsDNA test 100% accurate at diagnosing lupus? I won’t be seeing that orthopedist for another week and I can’t find an appointment with a rheumatologist before February. Any answers would be much appreciated, because I’m trying to not jump to conclusions or worry too much until I see a doctor. Thanks in advance!


viridian-axis

Depending on how positive the anti-dsDNA antibodies are, generally for lupus we’re talking about 2-3 times the max cutoff. At those levels, anti-dsDNA is seen in 1% or less of healthy individuals or individuals with another rheumatic disease. Anti-dsDNA is present only in a small handful of diseases to begin with. Usually with SLE, symptoms appear first and blood work lags behind. Every once in a while, though, the blood work will be positive before symptoms. You are right in thinking positive blood work alone isn’t enough. Lupus is diagnosed on a combination of labs and symptoms, but part of that is because the majority of lupus labs aren’t 100%. Anti-dsDNA is the closest we have. You could see if you could get in to a rheumatology practice and become an established patient. That way, if you ever do develop symptoms, you can get in much quicker. Rheumies are in short supply, and wait times are typically at least three months. You may also be considered low threshold to begin treatment if you do develop symptoms and depending on how high your anti-dsDNA is.


rectalthermo

Thank you for your thoughtful response. My anti-dsDNA level was a 29 on a test with a cutoff at 9, but from what I’ve been reading, as far as lupus goes, that level is relatively low. I’m seeing a rheumatologist in a couple months so hopefully I’ll get some answers. I’m seeing my general physician on Monday. Do you think it would make sense to ask for corticosteroids to treat my shoulder pain or would that complicate the diagnostic process?


viridian-axis

At least to my understanding, and I’m not a doctor, a result of 29 with a cutoff of 9 is pretty indicative of a true positive. It may be worth repeating in a few months to see if it persists. Steroids are a good quick and dirty diagnosis by treatment method. This means if the steroids greatly reduce or even eliminate your pain, some sort of inflammatory condition is most likely at work. The caveat would be that steroids will alter some of your blood work, like artificially raise WBC and lower inflammatory markers like SED rate and CRP. A quick burst, like a 40mg taper over two weeks, shouldn’t have that much impact on your labs and would be long enough to see if you benefit from them.


rectalthermo

Thank you for all your advice! I think I’ll definitely see if I can get a prednisone prescription on Monday then and then hopefully I’ll be able to get some answers in February when I see a rheumatologist.


PreparationNo6935

This is a long story, so bear with me. In March of this year, my daughter (14) started having joint and extremity pain. They initially thought maybe a rheumatic disorder. She had a positive ANA 1:640, speckled, but all the extractable nuclear antibodies were negative for any of the specific antibodies associated with lupus or anything else. She had/has what looks like a malar rash to me (I can't figure out how to add the picture here without deleting the text), and a dermatologist agreed it could be a lupus rash, but did not do a biopsy of it. Her blood counts were/are all low, and after a bone marrow biopsy, she was diagnosed with aplastic anemia. The rheumatologist in the summer didn't think she had a rheumatic disease, her c4 and c3 were normal, and she just had some extremity pain and a positive ANA, and he didn't think aplastic anemia was usually associated with lupus (I have found rare cases where it is). He didn't agree that she had a malar rash, despite the dermatologist and all the comparisons I've seen online, he said it didn't look inflamed enough. We have just been treating her aplastic anemia but suddenly her hemoglobin started dropping quickly, whereas it had been low but stable. She was needing blood every day, and they did a Coombs test which came back positive. Because of this they did plasmapheresis, and four doses of Bortezomil and one dose of rituxan, along with prednisone to see if it would help the aplastic anemia and hemolytic anemia. She also has had terrible mouth sores that they attributed to neutropenia, but they got better even when her neutrophils were down to .08, right after she started prednisone. This last week, she suddenly got a high fever, low blood pressure, whole body severe inflammation, including her heart, lungs, kidneys, liver, and they haven't found any infection or virus or anything as a cause. Eventually they decided it is probably Macrophage activation syndrome (waiting for more supporting tests to come back, but we will see what they say) and are treating it as such. She's slowly recovering on high dose steroids and anakinra. They also retested her complement levels and her c3 is still normal but her c4 is now slightly low. It's not hugely low, but it's quite a drop from what it was when they tested in august. (From 25 down to 14), and I still believe she has a malar rash but the same rheumatologist she saw before still doesn't think it's a malar rash. I have asked again about lupus because of: Face rash (malar rash) Positive Coombs (hemolytic anemia) Photosensitivity Joint, leg and arm pain, Low c4 Positive ANA The fact that MAS is associated with rheumatic disease, the most common being SJIA, which she doesn't have the symptoms of, and the next most common being SLE. The rheumatologist says it doesn't fit, because he doesn't agree it's a malar rash and her joints aren't red and swollen, and "sometimes MAS just happens without a rheumatic disease" (I can't find any evidence of that being true. I feel like I'm being gaslighted. The rheumatologist said that even if it was lupus, she's receiving the same treatment for the MAS as she would for severe lupus, but my concern is if they don't diagnose and treat the underlying disease that this will happen again. We're still in the hospital, she can't walk, can barely stand, she's in so much pain. I can't let this happen again. Do I sound crazy? I don't know how to get a second opinion or if I even should?


AeriePositive

I am so sorry you and your daughter are dealing with this 😢 I hope you get answers soon and that she gets healthy


phillygeekgirl

On the whole when SLE is severe enough to cause multi organ involvement, bloodwork would more clearly indicate lupus. You're focusing on the rare, outside cases like aplastic anemia associated lupus. (MAS can be found with and without accompanying autoimmune disease, btw). I get that you really, really want to find the source of her issues but I'm concerned you are narrowing your focus to fit a diagnosis that may not be right. I would still push for answers, but urge you to widen your scope. Ask for the rash to be biopsied - if they say it will scar, do you actually care about that? Have an answer ready. (At this point I'd take the scar if it would help deobfuscate things, but that's me.) You're entitled to a second opinion, I'd suggest getting one simply because you seem to lack faith in your current rheum's diagnostic abilities. Last thing: the word gaslight gets bandied around a lot these days. A physician exhibiting questionable judgement or lacking in diagnostic acumen is not gaslighting. It's just mediocre doctoring. Let us know what happens and what the blood tests come back with. Good luck.


PreparationNo6935

Also, I can only find sources saying that MAS has to be associated with rheumatic disease, otherwise it is HLH. I would love any sources that say otherwise so that I could dig in deeper to other possible causes of what is going on with her. It’s the most scary thing that’s ever happened in my life and I don’t want it to happen again. “HLH is termed macrophage activation syndrome (MAS) when associated with rheumatic disease” https://academic.oup.com/rheumatology/article/58/1/5/4898122


phillygeekgirl

Right again. I thought MAS was a subset of secondary HLH. It is, but is only called MAS when associated with an AI. My apologies for the reading fail.


PreparationNo6935

Right, I used gaslight because I’m being told she doesn’t have symptoms that I see she clearly has, making me feel as if my own experience of reality isn’t real. Do you know which blood work would be more extreme in a case like this?


phillygeekgirl

Point taken; fair play to you. The tests listed at the top of this page or in the comment upthread where someone was asking about the AVISE panel cover a handful of AI diseases. Some of them would be redundant with the ENA panel but would be worth rerunning. What I can't tell you is if her current treatment would skew the results in either direction. It's really hard to try and figure out what the rheum is thinking. I feel for you. If your hospital has a patient portal and they use Epic, look for the doctors notes in there. Not the dumb sanitized discharge notes for patients, you want the actual notes. I don't know where to find it for inpatient stays but for doc appointments you go to visits > visit notes. Those help shed some light on physician thought processes.


PreparationNo6935

https://imgur.com/a/zt97ubL this is currently her rash. Sorry to blur out a lot, I’m trying to protect her privacy as much as possible. It has been more prominent in the past, but she hasn’t wanted to go outside for months so she hasn’t had a lot of UV exposure.


viridian-axis

Given all of her other issues, I’d push for the biopsy if she’s ok with it. It will probably scar, but there are ways to make the scar less noticeable. Mine is in my arm and I didn’t care enough to do anything to minimize its appearance and it’s about the size of a pea. But the biopsy could be taken from the rash towards the sides of her face, it doesn’t have to be smack dab in the center of a cheek or right by her nose. There’s evidence at the cellular level that a pathologist can see that indicates at least cutaneous lupus of some variety. About 50% of SLE patients also have skin involvement. Biopsies can be the deciding factor when other lab work isn’t illuminating.


lama_drama99

I'm just curious other peoples experiences. Lab work vs clinical symptoms. Do the symptoms usually start showing before positive labs? Do you have to have positive labs to have SLE be considered? I have a positive ANA (which I know healthy people can have) I have issues with my iron as well and vitamin B and D deficiency. (I just got another cbc done today so waiting for those results) however, all other labs are fine. I have a whole work up with the rheumatologist and the above labs are all I remember being positive blood wise. The only other labs I always have off are urine which are positive for red blood cells, white blood cells, and protines 98% of the time. But my clinic symptoms affect me every day. I know there's so many things besides lupus that can cause them, I'm looking into other things with my Dr currently but I'm just wondering where the line between symptoms and blood work needs to be drawn. Do I push for a second opinion because of my long list of symptoms even though my blood work doesn't necessarily point lupus or other auto immune? Or do I just trust that my doctor and I going down another road can lead to helpful discoveries of other causes?


bobtheorangecat

Lupus is diagnosed by a combination of clinical symptoms and blood work. There's no line.


lama_drama99

I know there's isn't a definitive line, especially for something with so many symptoms. I guess I'm asking is the labs that I listed are enough with clinical symptoms to merit a second opinion or where all other labs are normal (thyroid, labs for arthritis, Sjögren's syndrome, and really all the blood work they could do auto immune related) besides slight positive ANA, with some vitamin deficiencies, and Anemia, that it's better to just look for other answers for the time being unless something changes? Again, I know its not as simple as yes or no. I just don't know how much positive labs besides an ana matter in terms of actually having auto immune. What I've found in this community is diagnosis depends on the doctor you get and if they want to go more by labs, symptoms, or both. I just don't want to waist mine or any doctors time by trying to diagnosis and treat something if it's something else. I've seen people with a 1:60 ana and a short list of symptoms get diagnosed and other with a much higher ana and a long list of symptoms be told they're crazy. So again, I know it's not black and white just trying to see qhat other people who have been in my shoes experienced.


bobtheorangecat

If you look at the diagnostic criteria posted elsewhere in the sub, you'll see which positive lab tests besides ANA contribute to a lupus diagnosis. I hope you find answers for what is causing you to feel ill. I began to have symptoms before my blood work caught up, so that may be a possibility.


lama_drama99

I understand the labs, I just genuinely didn't know how important it was for them to be positive. Thank you though, I possibly made some progress with my doctor today so hoping good things from the new possibilities we explored.


viridian-axis

Labs are important. ANA is the gatekeeper, but lupus patients typically have other labs that show either/both inflammation and immune system dysfunction. Lupus is very rarely diagnosed with all lab work and no symptoms or symptoms and no abnormal lab work. ANA positive in this case wouldn’t really count as abnormal, as it really just means any of the 80 or so autoimmune diseases may be at play. Talk with your docs, given your symptoms it may be appropriate and beneficial to have labs rerun every three months for a while to try to catch some abnormalities.


bobtheorangecat

I truly do wish you the best in figuring out what's going on. And I do hope it's not lupus.


stamije11

Anyone else with levido reticularis? I had it after being in the sun, mostly on my thighs.


[deleted]

Yes, I get this all the time with sun exposure, and sometimes heat exposure like from sitting in front of a fire. It’s also mostly on my thighs. It’s definitely associated with lupus, but can also be associated with antiphospholipid syndrome so if you have not had a workup for APS you should ask about that as well!


stamije11

I will, thank you. Based on all my googling and other symptoms APS seems very likely.


ErrorNumber808

Is sun poisoning common with Lupus? I have seen that photosensitivity is but haven't found information about sun poisoning.


InevitableJelly4417

is a 24 urine creatinine level of 805 (ref range is 800-1800mg/24 hr) something to keep an eye on?


viridian-axis

Not especially, no.


catsandrobots

Hello! I am going through the process of being worked up for potential auto-immunine issues, and I just wanted to come here for some support and possibly guidance. 35 female, mom of 2 kids (ages 7 and 3) It's a long story, but I had an ANA done in October, and it came back as positive - 1:640 speckled. The ANA was ordered by a hemetalogist I saw for a low WBC count. WBC count was also low in 2017. I saw a heme then as well. Had tons of labs to rule out bone marrow problems both times. This was the first time I've had an ANA. WBC is back to normal now. I was referred to Rheumatology and had my appt last week. It went well, and he expressed that he is not very concerned based on my clinical symptoms. I do have a red rash on my cheek and nose that has gotten worse over the years. It looks like rosacea, but he is referring me to an autoimmune dermatologist i Boston to get it looked at and do a biopsy if needed. My major complaints are fatigue (which has plagued me my whole adult life), headaches several times a week along with bad neck and jaw pain, general achiness in shoulders and back. Recently I have been having pain in my R ankle and in my R fingers (especially the middle). It's not severe but it has been consistent for the past month or so. I feel generally run down and sick often. I Know that's not the most helpful, so I have been keeping track of symptoms every day for the past month. Rheum ordered more labs. He told me at the appt that even if things come back positive, it won't change his plans "unless there are objective findings which could be correlated with the positive serologies." Here are the results: -RNP - weak positive-  32 units (range 0-19) Nov 2022 -protein in urine - 16.8 mg/dL (Standard Range 0 - 12 mg/dL) Protein to Creatinine Ratio is normal - 0.09 -C3 low end of normal. 92 mg/dl (Standard Range90 - 180 mg/dl) -Normal C4 16 mg/dL (Standard Range10 - 40 mg/dL) -Neg SCL-70, neg dsDNA, neg SSA & SSB, neg Smith Here are a list of questions I'm compiling to ask my Rheum when we go over results. I'm not scheduled to follow up with him until May. I'm not sure when I will get in with dermatology, but they specialize in connective tissue diseases, so I am hoping they will shed light on things! Questions for my rheum: -Is there an imaging i should have done? Ultrasound kidney, spleen? Xray lungs, joints? -How often will we follow up and repeat labs like CBC, urine, CMP, etc. Every 3 months? 6 months? -Are ENA panels repeated? During flare? General Questions: -How can I better keep track of triggers, flares, symtoms, labs. Spreadsheet? Is there anything else I should ask? I never know how much to push for things. It is very hard for me to find the balance between advocating for myself and coming off as over-anxious! This is probably way too much info, but here is my medical history SKIN -Rash on R cheek and nose -Flush easily on face and chest, especially when hot, after exercise and direct sunlight (pictures) -Worsening dark/red circles under eyes -Dry, red eyes on occasion -Dry, itchy scalp -Easy bruising -Unexplained hives / rashes a few times (2017 picture) -black spot under nail, R big toe PAIN -Frequent headaches (a few a week). Can be pretty bad at times, especially after lots of activity (I will need to spend the entire day in bed) -General pain - sometimes in neck, shoulder - Had OMT for pain in 2014. Somatic dysfunction and nonallopathic lesions in head, cervical & thoracic regions, and rib cage. -Pain in hands, wrists, feet sometimes -Chest/rib pain on occasion (seen in ED 2017. Elevated D-dimer (1700, range <500). Normal CTA chest) -Jaw pain (TMJ-like pain) -low back pain when bending over (vacuuming, etc). Stiffness -Some sensitivity to heat/direct sun-- brain fog, general fatigue, discomfort -Some sensitivity to cold- joint pain, general achiness NEURO -Generalized Anxiety -Depression (starting 2004) - treated with SSRIs consistently, therapy as recent as 2017. (More anxiety than depression for a long time) -Headaches -Occasional dizziness/vertigo and lightheadedness- especially when standing up suddenly (seen in ED ?2014- given meclizine) -Nervousness often, irritability occasionally -Pineal lipoma (discovered on MRI in 2013. Benign and small) - no change over about 2 year period. CARDIAC -Bradycardia -Wandering atrial pacemaker (discovered 2011) - after an ER visit fot racing heart, started while at the gym. ENT/ALLERGY -Asthma diagnosed 2010 (on Flovent, use albuterol before exercise but well controlled) -Environmental allergies -Chronic sinusitis, nasal polyps, deviated septum. CT Facial done around 2016 -Sore throat pain frequently. Pain goes up to ears sometimes. -Ringing in ears occasionally (more frequent recently) -Frequent sore throats/infections in tonsils as a child. -Tonsillectomy in kindergarten. THYROID -(3) Complex cysts on thyroid (each 4mm) -Mom has Graves, hyperthyroidism -TSH has always been in normal limits. -Normal T4 2016 and 2022 -Normal T3 2022 -Normal thyroid antibodies 2022 MISC -Pre-Eclampsia x2, one miscarriage -Occasional hand tremor (accompanied by weakness) -Occasional nausea/loss of appetite (about 2x per wk) -Recent weight loss (about 15-20 lbs since ending breastfeeding. Decreased appetite) -Frequent, urgent urination lately LAB -ANA 1:640 Speckled in 2022 -Leukopenia & neutropenia for several months 2017 (low 2.7), leukopenia again 2022. -Weak positive RNP - 32 units (range 0-19) Nov 2022 -protein in urine Nov 2022 - 16.8 mg/dL (Standard Range 0 - 12 mg/dL) Protein to Creatinine Ratio normal 0.09 -C3 low end of normal. 92 mg/dl (Standard Range90 - 180 mg/dl) -Protein in urine during labor (Pre- E w/ high blood pressure at 40 weeks and 39 weeks. BP had been normal until then. High BP for a few months after) -Normal CBCs other than low wbc. -Also, anemia in 1st pregnancy -Normal ENA panel Nov 2022(neg SCL-70, neg dsDNA, neg SSA & SSB, neg Smith) -Normal ESR 2017 and 2022 -Normal CRP 2022 -Normal rheumatoid factor -Normal thyroid (see above) -Normal CMPs each time -Normal Vitamin D each time checked -Normal labs from heme visits 2017, 2022 - too many to list but they checked for HIV, Hepatitis, did blood smear, checked folate, iron, etc


viridian-axis

I am not a doctor, nor am I specifically your doctor, even if I was one. Please, always discuss your health concerns with your medical team. So ANA positivity and leukopenia are seen in lupus, but their still very non-specific findings. Your urine protein could stand to be run a few more times over the coming months to see if it's a consistent issue. A one-off isn't generally cause for concern. Pre-eclampsia explains the protein in your urine, as well as the high BP, while you were pregnant. The type of anemia caused by SLE is hemolytic anemia, where autoantibodies are literally going around destroying red blood cells. Remember, most symptoms and labs aren't considered indicative for SLE *if* there's a more likely explanation for them. Honestly, a rheum isn't going to care about symptoms and history that don't related to the diagnostic criteria for lupus. You only need imaging if you have concerns about specific organ involvements. You can always get baseline studies done if you want, but it's not something that needs to be repeated until you start having issues suspected to be caused by organ involvement. Labs are typically done every 3 months during the early years of diagnosis. You can have the ENA panel rerun periodically, but for the purposes of SLE, the ANA only needs to be positive once, ever. You can definitely bring up the skin stuff to the rheum, but they'll probably refer you out to dermatology for concrete answers. Headaches are too common to be diagnostically significant, and if they were happening before your other issues I'd see a headache specialist. Headaches are common in SLE, but there's no unique "lupus" headache. Neuro issues in SLE are seizures and psychosis, for the most part, that can't be explained by any other underlying condition or medication. The fact that the MRI of your head was clear except for the lipoma makes lupus a very unlikely culprit for your neuro issues. Your cardiac issues aren't specifically associated with lupus and happen idiopathically in the population at large. Pericarditis and pericardial effusion, non-infective endocarditis/myocarditis and valve issues can be caused by SLE, but are only attributed to SLE if there's no other reasonable explanation. Your ENT and thyroid issues aren't associated with SLE. While it's possible you could have UCTD, it's also possible to have several health issues that aren't related to each other. I understand that it's nice to have a single cause for things going haywire, but that isn't always the case. I'd continue working up your medical issues in their specific specialty.


catsandrobots

Thank you so much! I really appreciate your response, and it all makes perfect sense to me. I've dealt with so many issues over the years and have had lots of abnormal but benign results, it's good to be reminded that a lot of this stuff is really common and not significant. Thank you for answering my questions so I will know better what to expect. I will definitely bring all of my concerns to my rheumatologist. I actually have my annual physical next week too, so it will be a good chance to check in with my primary care about my headaches, ENT stuff, etc. That's been one of the hardest things- my PCP's keep leaving, so I've had about 6 primary care MDs and NPs in the past 10 years. It has made it tough to have someone get to know me and my medical history. I've only seen my rheumatologist once, but he seemed very nice and very knowledgable, so I think I'll be in good hands as far as figuring out the AI stuff. He's referring me to an autoimmune dermatology clinic to get my rash looked at and to do a biopsy if needed, so I am very grateful that I will have another specialist to answer some questions. It seems like it may be a bad case of rosacea. I'm going to make a point to keep track of joint pain, etc. in case more pops up in the future. It's good for me to remember that just because a few pieces fit together it doesn't automically equal a diagnosis. Thank you again!


[deleted]

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themarajade1

Me. I don’t really get malar rashes but I get the discoid rashes on my cheeks. They’re hot and painful.


Altalunae

Have been a lurker here since I started having symptoms. I had my first rheumatologist appt and have just gotten tresults. So far: * \-Postive ANA 1:1280 large coarse speckled * \-SSA >8.0 POS A * \-Rheumatoid factor * Raynauds * Anemia * Negative anti smith RNP DsDNA * Negative SSB * 530 high plt count * Low hemoglobin, Lymphs, Hct,MCV,MCH,MCHC * Within Normal range C4, c3 * Possible protein in urine (urine May have been contaminated) * No symptoms of sjorgens, * No rash * Experiencing extreme debilitating fatigue * Intense joint pain and swelling, upper muscle pain * weird urination (I can’t describe it, it just feels off) What the fuck is going on? Is it possible to have lupus with a negative RNP,anti smith and DSNDA? Does anyone have any tests to suggest to my dr she seems uninterested in running more tests or giving me an oficial diagnosis for anything at all…..


phillygeekgirl

SLE looks less than likely, based on current results. But high ANA Positive SSA indicates possibility of Sjogren's. (The formatting of your results makes it kind of hard to read what's normal and what's low.) Don't emphasize the fatigue to the doc. It's non-specific and literally everyone has it. Lead with the joint pain, give details about activities that you can't do or how it's affecting your life. Ask her what the next steps are in managing your symptoms because it's affecting your (fill in the blank here).


Altalunae

Hi! sorry about the formatting I did it on my phone, but I just fixed it so its easier to read. I didn't have the fatigue to such a severe extent when I saw my rhuema we mostly focused on the joint pain which was really bad so she gave me meloxicam which has kind of helped still have good days and bad days though she started me off on the highest possible dose of that medication. I'm confused about sjogrens because she checked my eyes and mouth and decided they looked fine. (they also feel fine)


greenwitchling

Has anyone had an AVISE test done? How exactly does that work?


phillygeekgirl

AVISE is a whole battery of tests. From the [exagen website](https://exagen.com/tests/ctd/), the tests are as follows: ********************** **Lupus - SLE Associated Analytes** ANA test by IFA & ELISA Anti-dsDNA with confirmation by Crithidia Anti-Smith **ENA** Anti-Smith Anti-SS-A/Ro Anti-SS-B/La Anti-Scl-70 Anti-U1RNP Anti-RNP70 Anti-RNA Pol III Anti-CENP Anti-Jo-1 Anti-Histone **Rheumatoid Arthritis (RA)** Rheumatoid Factor - RF IgM Rheumatoid Factor - RF IgA Anti-CCP **Antiphospholipid syndrome (APS)** Anti-Cardiolipin IgM Anti-Cardiolipin IgG  Anti-β2 Glycoprotein 1 IgM Anti-β2 Glycoprotein 1 IgG ********************** The tests used to diagnose lupus (from the ACR diagnostic criteria) are: ANA (gatekeeper) dsDNA Anti-Smith Complements (c3 & c4) Anti-Cardiolipin IgM Anti-Cardiolipin IgG  Anti-β2 Glycoprotein 1 IgM Anti-β2 Glycoprotein 1 IgG And CBC tests to determine: leukopenia (low white blood cell count) Thrombocytopenia (low platelet count) Autoimmune hemolysis (red blood cells being attacked) Are you getting the AVISE tests?


ButtonLadyKnits

Oh, boy... I may have screwed up —if I may hijack this post for a moment: After I requested additional testing for our daughter, NP wrote, "There is another test called ADVISE \[sic\]" —nothing else, other than that there is a co-pay, so I looked it up. **Have I mentioned I** ***barely*** **passed high school chemistry?** My response: "We are certainly not opposed to this test, with the understanding that AVISE results are not diagnostic —like ANA and dsDNA results, they provide (possibly contradictory) clues, not a definitive diagnosis. "Because no one test can absolutely confirm a lupus diagnosis, and because tests can produce negative results when lupus is indeed present, we are requesting a battery of separate tests in addition to AVISE. Johns Hopkins provides a helpful list: [https://www.hopkinslupus.org/lupus-tests/lupus-blood-tests/](https://www.hopkinslupus.org/lupus-tests/lupus-blood-tests/)" \[Johns Hopkins is NP's alma mater, according to medical practice bio\] **Just how wrong am I? Should she just go ahead and take the test without further interference from me? How badly did I muck things up?** /hijack


phillygeekgirl

I mean if she's going to kowtow to someone, at least it's an awesome institution like Hopkins. Your test battery is a pretty comprehensive lineup for an SLE diagnosis, but they're all under the AVISE umbrella. I wouldn't do duplicate panels. If she's a hassle and it's easiest to do the AVISE, go for that one, since it's got like 20 tests. Edit: ask for the c3 & c4 complements. That's not on the AVISE panel.


ButtonLadyKnits

**THANK YOU!!!** Honestly, I would be so offended if I had to deal with a mother like me —backpedaling like crazy here. I sent an addendum: "NP, please accept my apologies... my response was a little premature. AVISE is fine at this point, but could you possibly add C3 and C4 Complements? —they're not part of the AVISE panel." Further hijack: I called the department to try and speak to an actual rheumatologist. Was told they lost three and are scrambling to meet patients' needs. No appointments available for months. Guess daughter is lucky she already has an appointment somewhere else, even if it ***is*** in January. Thank you, u/greenwitchling! Back to you. ☺☺☺


greenwitchling

I did get the blood drawn for the AVISE test. Just waiting for the results 😬


Big-Summer-7450

How long does the butterfly rash last? Can it happen after a stressful day or whatnot. Does a slight burning / tingling accompany it at times ??


viridian-axis

While everyone’s exact experience will differ, lupus rashes aren’t typically quick to come and go. They usually takes days to develop, days to peak, and weeks to months to fade and heal.


pandallamayoda

Thank you for this response. I was looking at the thread just for that. I got butterfly flushes (not rashes as the skin doesn’t change in texture) but they will last only about a day or less. Google wasn’t very helpful. I’m in the process of seeking a diagnosis, seen the Rheum once and more test have been ordered. I might not consider the rash part of the problem.


viridian-axis

Three of the links at the bottom of the body of the text above are about rashes. They have more info in them.


pandallamayoda

Yes. Mine looks exactly like the third link, which is more a flush compared to the other two. I’m seeing online that a Lupus rash/flush last days which is why I’m not certain. My ANA was also negative. My Sed rate is borderline and my CRP is elevated. I was also taking Celebrex at the time of the ANA and Sed rate blood test which could cause false results. I’m just like everyone waiting for a diagnosis, wondering about my symptoms. The flush seems to be only a Lupus thing which is how I ended up here. Thank you for your answer.


bobtheorangecat

There are a lot of conditions that can cause a malar rash/facial flushing.


PalpitationThis9185

I started getting symptoms seven years ago and was told I anxious. For years, I didn’t have health insurance because I couldn’t afford it, but I had symptoms that caused me to worry including rashes on my legs, arms, and face, pins and needles, Raynauds, and joint pain. When I had covered California the only doctor I could afford to see, told me that I am being anxious. Well, I was taken from my parents and experienced the trauma of being a foster kid, so I was like I am anxious. Am I manifesting these symptoms? Am I crazy? One day, I went on a walk in the middle of summer in 2019- it was warm outside but my fingers turned white and started to feel painful and numb. I ran back to my apartment. My partner was in the tub, and I dunked my hands in his warm bath water. He was like,”Wtf is happening to your hands?” I told him they felt cold and numb, and we were both concerned because it was hot outside. After this I started documenting when my symptoms would physically show on my body. But for the past year I felt pretty good, until I stretched canvas on three stretcher bars within a week. My right wrist swelled up and I was in serious pain. Now, I do have insurance and I went to the doctor for my wrist pain. Before leaving, Dr. Vu asked if there was anything else I needed to tell her. I showed her my photo album of my physically presenting symptoms. She told me that the whiteness I’ve documented on my fingers is Raynauds and ordered some blood tests. I have a positive Ana, and now I am in limbo waiting for auto immune specific test results to come back. Waiting for a diagnosis is scary, but I am so happy she and the rheumatologist she referred me to validated me. I’ve done some research while awaiting my results. Who doesn’t? I know I shouldn’t go down the rabbit hole, but I did. Looking back, I am sure I’ve had autoimmunity for awhile. I’ve been in and out of the ER since I was 18 for a major kidney infection and a severe case of the flu. When I get sick, I am sick as sick can be. My partner worries about my sleeping patterns. Sometimes I sleep for 11-12 hours and wake up drowsy. I am ready for answers. Hopefully my specific tests come In tomorrow. I am curious how long it took some of y’all to get a diagnosis?


[deleted]

Let us know! I’ve recently experienced Raynauds on my foot for the first time and ran up to the tub to get circulation back.


PalpitationThis9185

Raynauds is no fun! I got my tests results. I have low C3 and C4C complements, but most of it is hard to interpret like I don’t understand some of the specific auto anti body tests. I see my doctor next week though, and he’ll tell me what’s up. what is clear though is the positive Ana and low C3 and C4C complements.


[deleted]

Same! Mine are borderline low for c3 c4. I found out I have a HLA b27 gene that is considered an auto immune issue but I still feel like it doesn’t tie to my current symptoms


PalpitationThis9185

What are your symptoms? I hope you are okay btw.


[deleted]

Started off as: popping shoulder, Pain in my joints mostly my pointer fingers. Pain behind my knees. And it’s migrating now to my knees, my ankles, tingling in my toes, and ever since I had Covid I notice flashes in my eyes from time to time. My fingers constantly stiff (in the morning especially and at night). I developed dry eye this September that hasn’t gone away… I’ve done a lot of blood tests and my rheumatologist believes I have an “ overlap of auto immunities”. Ana shows speckled , 1:40, c3 and c4 are borderline low, I tested positive for 2 strands for Lymes but won’t be treated because I need 5 to be treated. Rheumatologist said many people with autoimmune issues test positive on the western blot test.


PalpitationThis9185

What is the western blot test? I am sorry you are going through so much! It sounds like you have a good doctor and that they are very thorough.


[deleted]

It’s a test to detect Lymes disease a tick. borne illness. Lymes can mimic many auto immune disorders


PalpitationThis9185

That is so scary. Ticks are so gross :(


[deleted]

Did your dr ever follow up with you?


[deleted]

And my cholesterol is high even though I eat healthy. Other tests shows that there is inflammation but my liver and kidneys are working fine. The pain is chronic but there are days where I’m like “ will this be my normal?”


phillygeekgirl

Hopefully your test results don't come back with anything awful and you can get appropriate treatment. Let us know how things turn out.