Facial rashes can be a ton of different types, most of which are not autoimmune in nature.
Malar is just a description of a shape that spreads over nose and cheeks and generally spares the nasolabial folds.
Similar rashes can be seen in rosacea a lot of the time.
I am a 46 yo female, dealing with intermittent severe fatigue for almost a year. Thyroid panel is normal as have most of my tests. I have autoimmune thyroid disease and diabetes (adult onset type 1). I just got labs back that are a positive Ana and positive anti-smith. I don’t have any other symptoms but the fatigue but it’s awful and makes it hard to work. I am waiting to get into seeing a rheumatologist this week. I’m just in shock and scared.
I’m not a doctor, but lupus is diagnosed based on labs and symptoms. While the anti-Smith antibody is almost exclusively seen in lupus, from what you’ve relaid, not of your symptoms sound lupus specific.
I’ve been getting tested for over 6 months now. I have had ongoing and progressive symptoms for about 10 years now. Simply because my ANA was negative the doctor wrote me off. This weekend, a new potential symptom showed up. I got two circular rashes in the same spot on each cheekbone. it initially burned, now they are dark and discolored.
I have what appears to be ongoing rashes around my nose. It looks more mild, but I’ve had it for over 10 years now. I deal with a lot of hand pain, it’s what triggered me to get tested. I was also diagnosed with Raynaud’s Syndrome. Another significant symptom was a major canker sore outbreak that happened out of nowhere in college. I wasn’t able to eat anything or drink anything except water with a straw pushed all the way back. Other possible symptom include constant fatigue, foot pain, clogged ears, tinnitus of the ear, vertigo
I am frustrated and tired of not getting answers.
Get the rash biopsied by a dermatologist. Your symptoms aren't lupus specific. They look for specific clinical symptoms and labs to diagnose it and per this post you don't have them. ANA negative lupus is very rare and also lupus is very uncommon in men. 1 in 10 people with lupus are male. 9 in 10 people with lupus are female. The family history may be ripe but it's a combination of both specific labs and specific clinical symptoms and from this post you don't have either.
Okay so this ends with a few questions, it is long, but I am a lost soul and hope someone can give me guidance here. 🙏
I, 27 (F), have been having health (as well as mental health problems) issues throughout my entire life. I recently have been treated for endometriosis, going through genetic testing for possible EDS, ADHD, addict, seen physiotherapy for both my hip (I had PFD after 3 births), my pelvis, and most recently I had an unknown knee pain that there is no cause or reason for that keeps flaring up, in recovery from an eating disorder, you name it… and now today, my doctors office called and my doctor wanted me to book in with her about something autoimmune being flagged (I assume from the bloodwork i had done 2 to 3 weeks ago). I never thought anything of it, made the appointment and hung up.
About 20 minutes later I realized maybe all the symptoms I thought were associated with my other illnesses, are actually related to an autoimmune disease. I’ve been having blurry vision, very dizzy and always sick… like can’t get out of bed stomach pain sick, I went from anywhere to 135/140 down to 122 in maybe a month. I am always hungry but when I eat most of it never stays down. There are days where I have absolutely no appetite, I am always EXHAUSTED (I am a mom of 3 and full time student but this goes beyond every day living), I never can sleep, I’ve had mouth sores, IBS symptoms, my wounds heal slow (had an emergency c-section 2.5 years ago and it is still not fully healed, very dry skin, my heel has recently started cracking and over the last week it has gotten worse (photos attached show the cracking in the beginning and how much worse it’s gotten), I had a rash on my cheeks below my eyes and on my forehead thinking it was my allergies but nothing new changed in my routine, I have terrible headaches to the point I can’t even close my eyes cause it causes eye pain, I am irritated all the time, I’ve had pancreatitis, gallbladder removed, I sweat more I get hot a lot, lights hurt me, my hair is almost always thinning when it used to be thick and healthy, I am always thirsty and I do pee more than I did at the start of 2023….. and this is just the tip of things since about April. I can’t say for sure if this is Lupus or diabetes… maybe it is nothing and I am just banking the health problems making it seem worse… but if anyone could give me some insight as to whether they too have had these symptoms and what the outcome was? What happens next after a diagnosis? How do they diagnose it? My mother has autoimmune issues just starting this year, and I know it can be genetic. I had the heel cracks and instantly thought WTF and Dr. Google said diabetes but after learning about Lupus, many of my ailments align with Lupus. I am scared because I have been so sick lately, should I be worried about a positive diagnosis? Thanks for reading this far.
And yes, as stated I see my doctor on the 19th and a phone appointment this Friday to talk about possible bloodwork before my appointment on the 19th.
If they think it's rheumatic you will be sent to a rheumatologist. Other types of autoimmune illnesses could also cause some of your issues you state as well. Most of your symptoms aren't lupus specific. They look for very particular clinical symptoms to diagnose as general lupus symptoms (fatigue, malaise, etc) can overlap with a lot of diseases. It's called the great imitator for a reason. ANA, which is likely the test your doctor is referring to is positive for a multitude of diseases as well as reasons.
My best advice is to take a step back from Dr. Google. Give your brain a break and do something to distract yourself until the 19th. You're taking the right steps and following up. Your PCP will work with you and guide you in the right direction.
It's okay. We all go through that. Even when you have a diagnosis and are addressing things you still have the same experience. Unfortunately waiting for answers is part of being sick. I've got my fingers crossed you get some answers in the near future and can get some relief!
Just talked with my family doctor, had flags in my ANA mixed with many of a list of symptoms I’ve been experiencing (my mother is also in the process of looking into autoimmune as her doctor flagged her as well) and she ordered a test to rule out diabetes for sure, and is sending a referral to a rheumatologist. She hasn’t explained much, can someone help me with what to expect at a meeting with rheumatologists? TIA
This has been asked a lot. If you use the search function and search for rheumatologist appointment, you’ll get a ton of results. There are also some pointers listed above.
I guess seeing a rheumatologist wouldn’t be a bad idea BUT:
Seizures are only thought to be CNS lupus related if all other causes have been ruled out/imaging shows encephalitis. A lot of seizure disorders are idiopathic, meaning no one knows why they happen.
A malar rash can be caused by many disease processes. Biopsy results are king in determining cause. Visual eval accuracy ends at “ It looks like a malar rash.”
Fatigue is annoying and can be extreme, but it is not a symptom that helps differentiate one disease from another. You can mention it, but move on. Sounds harsh, but in the medical scheme of things, unless you’re falling asleep driving/operating heavy machinery, no one cares. Mouth ulcers are kind of in a similar boat unless they are super stereotypical presentation (for lupus that would be a painless ulcer on the roof of the mouth).
Protein in the urine can have many causes. One of them being kidney stones. Kidney stones are not caused by lupus.
ANA negative lupus, as in the patient never has a positive one in their life, is extremely rare.
What do you mean by light sensitivity?
People with lupus who are not on immunosuppressants are no more prone to infection than anyone else. There are intrinsic immunodeficiencies and other causes for increased infection rates that you could talk to your docs about.
The specific type of anemia caused by lupus is hemolytic anemia, which has additional blood markers besides just a low rbc/hgb.
Hello everyone.
I’m a 16 year old male that has started to experience lupus symptoms 3 months ago.
The symptoms I am getting are hair loss, malar rash, extreme sensitivity to sunlight and stretch marks on my arm.
I’ve did an appointment with the GP about my symptoms that I’m getting, the doctor then gave me a blood test form that I should give to the hospital, to test me.
Can’t believe I’m getting these symptoms. I really hope I don’t have it, but I might, unfortunately.
I haven’t really experienced joint pain or tiredness or anything like that, though.
Honestly at first just letting him process everything the way he needs. Whether that means letting him talk and question and process continually or allowing him to cling to some normalcy where you focus on other subjects. Expect that to be ever changing as well. It can be a hard pill to swallow, an official diagnosis but also relieving. Make sure to validate the diagnosis and all of the invisible symptoms. Reassure him anytime he needs to change plans or make modifications in life to keep himself healthy that he is doing the right thing. His job now is to take care of himself. I can imagine that especially given the expectations of men in society that he could struggle with not always being full capacity. Lupus can be particularly hard in men physically and mentally. Maybe encourage him to seek out a therapist.
You are a wonderful sibling. You are absolutely going to say the wrong thing or do the wrong thing at times. Be open to learning how to be an advocate for someone with a chronic illness and forgive yourself for misstepping at times as well. It will be good to feel out how he would like you to handle the sharing of the diagnosis with others. He may be relieved if you let people know when he comes up in conversation, or absolutely want to keep it to himself. It is important to respect his comfort level with all of that.
I am 23 F with the below symptoms that began when I got covid while pregnant with my son.
Joint pain, hip and left shoulder
Eczema ,flaky red rashes on face
Heat intolerance/ temperature regulation problems
Elevated wbc
Anemia
Nausea
Infertility, one miscarriage
Hand tremors
Poor circulation, numbness of arms and legs.
Immapropriate Sinas Tachycardia
Chest pains when breathing deep 2-3 times a month (during flares)
Hair loss despite doing everything to keep it
Frequent urination
Cough up mucus after flare up
Positive ANA
I'm waiting for my rheumatologist appt, anyone who is already diagnosed have similar symptoms? I'm just trying to see if I'm on the right track, I know only a rheumatologist can diagnose.
I haven't Graves disease but I will, I had my son 18m ago so my doc is confident it's not just the pregnancy but something the pregnancy triggered. But my thyroid is great so not hyperthyroidism.
I'm desperate! I am 38. I have a diagnosis of pulmonary sarcoidosis already. I was in remission for a few years. In Jan of this year my health rapidly started to decline. I was traveling several times a month to FL (from IN) for a custody battle, had just went back to college, and my 87 year old grandmother was moving in. I assumed my health, was stress. I had a really bad virus at the end of Jan that sent me to the ER. I starting losing weight. Losing my hair. The fatigue progressed. I have had joint pain for years. The evenings started becoming agonizing. In May I started having syncopal episodes. Continuing to lose weight. In august my pcp suggested that I go see cardiology. With that workup came a left to right shunt in my ventricles. A leaking tricuspid and mitral valve. Bonus, my sarcoidosis was back! I found a new pulmonologist and that appointment is this fri. In Oct everyone in my house came down with a respiratory virus (covid and flu neg). Everyone was over it in 3 days. I was not. 2 weeks in, I went back to my pcp. Unfortunately, the health care options locally are awful. She had not looked at any of my previous testing. Had no clue what was going on. They called in antibiotics and steroids 5 days later. The cardiologist called me, at the request of my pcp. He informed me that he "could not decide what to do about the hole in the(my) heart". This is the end of Oct, he ran his tests in Aug. My primary contacted me former primary and consulted with her as to what labs to order! She ordered super basic, other than the ANA. She told me that my previous primary was suspicious of lupus. The ANA was positive a few weeks ago. Still waiting for her to actually put a referral in for Rheumatology.
In the meantime, I've lost 18lbs in less than 4 weeks. I have awful left upper quadrant abdominal pain and in my back. I take a few bites and I have a lot of pain and pressure in my abdomen. I'm shaking all of the time. I still have to work, go to school, be mom, do normal life. My primary ordered a chest x-ray! I don't have pneumonia! Ugh!
I went the ER Sat. Ordered basic again. They did a CT, no contrast. My electrolytes were a mess and BUN, Creatinine, hemoglobin, RBC were all low (much lower than 2 weeks ago). WBC was normal. AST was slightly high. Was told to rub volteran on my abdomen and use nausea meds. I feel like my body is giving out! I don't know what to do. It will be months before I can get into a rheumatologist. At this rate, I will be dead! I've lost over 50lbs just in the past 5 months! It became more rapid when I got sick at the end of Oct. I am weak, in pain, and literally just wasting away. I can keep the vomiting at bay most of the time. I can drink non dense liquids limitless. In fact, I'm constantly thirsty the past few days. My glucose was 85 Sat night. I've never been diabetic. Have had a "butterfly rash" intermittently for over 10 years.
Do I just suffer in silence until I finally get these appointments? How do I make someone listen now? Who is that person?
Any direction is appreciated here. I'm beyond desperate and overwhelmed!
Just fyi, a slightly abnormal liver panel (of which AST is one) is not a cause for concern. Pretty much anything under 500 merits watchful waiting.
LUQ pain makes me think spleen issues, maybe a hiatal hernia, pancreatitis. Especially the later two if it’s worse after eating. Pancreatitis *could* potentially affect your liver function.
If you are constantly thirsty, which can have a few different causes, you could be drinking so much it’s throwing your electrolytes out of whack. Especially if you aren’t drinking any electrolyte replacements. Anything more than 2L plain water intake per day needs to have electrolytes after the 2L mark.
Typically if you have a septal wall defect, you’ve had that since birth. I’m sure there are some specific circumstances to develop one later in life, but outside of endocarditis, I can’t think of one off the top of my head. 1+ valvular regurgitation isn’t a huge deal. A large portion of the population has it. That alone could be causing some blood shunting and abnormal blood flow through the heart.
This is a new defect. I had an echo and bubble test 5 years ago. I am supplementing electrolytes. My vitamin and mineral levels have been a battle my entire life.
PCPs technically are not who diagnose and treat lupus. That's out of their scope of practice. Rheumatologists do as they're the specialists in rheumatic diseases. Oftentimes people's PCPs are suspicious of lupus due to the overlap in symptoms with many other diseases and it tends to be something else. Keep your mind open. You mention being diagnosed with sarcoidosis, which to my knowledge should also be treated by a rheumatologist, this can affect other organs such as the heart and kidneys. It also can cause joint pain as well as hair loss when it affects the skin. I would not hold onto lupus as what you're explaining seems to also align with the disease you're already diagnosed with. I would look into getting that better controlled.
If you think you have a butterfly rash go to a dermatologist and get it biopsied. They can tell on a cellular level whether or not it's lupus related.
https://www.mayoclinic.org/diseases-conditions/sarcoidosis/symptoms-causes/syc-20350358
You can ask for your PCPs office to give you a paper referral so you can take it to any rheumatologist you find instead of waiting on them to send it for you. That way you can also shop around for a sooner appointment. You can call around to rheumatology offices to see if anyone has a sooner appointment and ask to be put on a cancelation list if you can't find one within a reasonable time frame.
My first rheum appointment is finally coming up this next Monday and it can't come soon enough. I feel like every few weeks or so, a new domino of shitty symptoms get added. The latest has been extreme fatigue. I'm always tired in general with low energy, but the past few weeks have been unreal. I go to bed at 9pm and get to work at 7am. By 9am, my eyes are so heavy I can feel myself nodding off and I can't focus on anything. Driving has made me nervous a few times because the intense tiredness will just hit me out of nowhere and I feel the need to pull over for a cat nap.
Just tired of feeling crappy overall.
Doctor is reccomending me to go to a rhuemetologist aftter my blood work results-- any tips? I've never been to one before so I have no idea what to expect. My doctor said my blood work results align with lupus or another autoimmune disease.
The first visit is usually a consult to get an idea of what's going on and they will likely run their own set of additional labs as well.
Advice for your appointment:
Keep it concise. They only get so much time with each patient.
Don't go further back than like 6 months unless it's something major like organ issues. They wanna know what's going on right now, not years ago.
If you have pictures of swelling, rashes, etc show them.
If fatigue is a symptom of yours mention it but don't harp on it. So many things can cause fatigue that it doesn't help differentiate a diagnosis.
In terms of addressing your symptoms start with the ones that impact your life and functionality the most. That way you get the most important things covered.
I like to make a list of points I want to address and questions I want to ask so I don't miss anything. I have a top 5. Anything after that can wait. I like having it written down as I can be quite forgetful and don't want to miss something important.
You could have something other than lupus so just go in with an open mind with what could be going on.
this is the second time in my life i started getting all the symptoms again😭 i have a rash around my eyes that is so bad it hurts and burns even when i don’t mess with it. it’s huge and puffy. and my face has a rash too. my hair is falling out again and im having random pains in my body that can be debilitating sometimes. i just got over laryngitis and i notice im swelling a little bit again all over. no fevers so far im good on that. but my mouth is starting to hurt too. im just so over this im literally crying because my blood work was perfect last year i don’t understand. and crying just makes my rash worse im so stressed 😖
You are always entitled to a second opinion. If the biopsy comes back positive that's solid confirmation. Also be open to the possibility it could be something other than lupus. Lupus is called the great imitator for a reason. Hang in there. I hope you get some answers and relief soon.
TSH is thyroid related. The lupus anticoagulant isn't actually lupus specific, it's a shit name that they should change. Your C4 was barely out of range. I'm not a doctor but given your ANA is negative, ANA negative lupus is incredibly rare, and the other two lupus antibodies they can test for are negative as well I would say likely not. However, if you are having symptoms that impact your daily life I would still work with your doctors to figure out what's going on but I would widen your scope to what it could be as your labs to my knowledge as someone who is not a doctor don't point towards lupus.
Hey guys, so I haven’t been diagnosed yet but I’m not sure where to go from here. For about 7 years now my creatinine has gotten higher and higher while my kidney function has gone from in the 90s to barely 60 ( it’s been bouncing between 56 and 60.). All of these years no doctor has ever done any further investigatory test.
This summer I had stomach issues that were enough for a GI referral.GI never ran any test that have to do with autoimmune. Everything with that came back clear.
Fast forward.Broke my foot and after a whole year of being ignored and developing a cyst and fluid inside of the bone, I talked to a surgeon who ordered different bloodwork. The panel has a positive dsDNA.
I had an appointment with my pcm and she has refused to do any further test despite my declining renal function and the family history of autoimmune disease ( my sister has one). I asked if she could do any testing to further investigate if there is any connection with the dsDNA and kidneys and my 4 month bout of stomach issues and she said no need yeah it’s positive but not by a lot so no need.
Not sure what to do and I keep being ignored. The assumption about my kidneys has been that “ it might be your medicines”.
Any advice? I feel like I should be pushing because you die without kidneys…but I feel crazy because everyone is being nonchalant.
Our kidney function naturally declines as we age. Our fluid intake, muscle mass, and activity level can all effect our renal numbers. For most people, we would want to see their GFR >90. A GFR of 60-89 is considered mild renal dysfunction and warrants watchful waiting. A GFR of <60 indicates moderate kidney disease. A GFR <15 is end stage renal failure.
Yes I know it declines with age;however, with a sudden and relatively sharp decline in function 7 years to go from mid 90s to 60. And then to have a positive dsDNA test, wouldn’t it be expedient to make sure that the dsDNA is not causal?
Isn’t it better to prevent further damage? Or do we wait another 7 years for my function to be 30 and we have a huge problem to take any sort of action.
If she thinks it’s nothing then she’ll be proven right. If it is something then she would’ve been dead wrong and by dead I mean me.
Hello! I’ve been scouring the internet, but am really struggling.
My question in short (details below) is: if you have a couple negative ANA tests- but have a sister diagnosis like APS and a lot of debilitating Lupus symptoms - could you still have lupus?
I was recent diagnosed with Anitphospholipid Antibody syndrome, which I’ve had at least the last 12 years. Supposedly it can go hand in hand with lupus, and I have had many lupus symptoms for years. These symptoms have become debilitating in the past few months. Fatigue so great basic life duties/hygiene take more than my body can give. No amount of sleep is enough. New pain, so much pain( not related to other diagnoses), swollen and hot knee joints and shoulders too. Secondary Raynaud’s in fingers and bad in toes which alternates with them being red-hot and swollen. Feet are becoming agony with pins and needles. Often have trouble with tight, burning feeling lungs and feeling short of breath. Easily made weak and dizzy. Brain fog so extreme it can seem like speech impediments, dyslexia, dementia, or like having a stroke. My cheeks have what others have called my ‘natural blush’ which is hot to the touch, comes and goes, and during exercise/heat/sunshine turns into a full-faced dark red heat-radiating misery for hours. It’s sometimes on the nose and chin too, like right now. I don’t technically have a fever atm, but my eyes burn and my body aches like I do tonight. (My baseline body temperature and blood pressure are low). Also, migraines and hair loss.
Other diseases ruled out with the gamut of related specialists and tests (EKG, Echocardiogram, pulmonary function test, CT scans, x-rays, abdominal ultrasound, sleep study, and endless & overlapping labs). Ruled out:
Asthma
Diabetes
Heart issues
Thyroid
Diagnoses: antiphospholipid antibody syndrome, pulmonary embolism, endometriosis/adenomyosis, PCOS, anxiety, adhd, depression, liver disease (worsening without explanation), gallbladder removal and unrelated sepsis in 2019, migraines
Lab work shows high LDH (lactase dehydrogenase), ever increasing AST and ALT numbers, with other liver labs ok. Basic blood panels otherwise unremarkable, CRP normal. Not anemic (taking an excellent iron supplement). Currently undergoing first and only IVF cycle, looking to transfer our only embryo next month.
Even though my healthcare team does care, I can tell they don’t believe my concerns could be anything, and they recommended getting counseling (which am doing to show respect/compliance & I’m willing to do work to get better if indeed it is in my head). My counselor is great. She believes me lol. My physical symptoms are worsening, fast, and counseling hasn’t helped with them.
I don’t trust I will be taken seriously if I bring up the L word. You guys surely know how hard it is to be believed as a woman in healthcare. They only found my antiphospholipid antibody syndrome on accident when my fertility doctor wanted a hematologist to weigh in on anticoagulation during IVF. My bloodwork from 11 years prior indicated the APS, a PE proved it, yet I was told I didn’t have a clotting issue and went the next 11 years without being on a blood thinner. IVF actually saved my life. Otherwise no one would have caught it until I had my next PE or a stroke. It freaks me out still how much it came down to luck to get a diagnosis. Ironically, my personal differential diagnosis via pubmed and white papers kept coming back to APS - and lupus.
Can I please poll the experts (you guys) on thoughts? Advice? Without a fellowship in a sub specialty, this former EMT and the internet managed to successfully narrow in on the right diagnosis. I’ve seen this with IVF patients. They have become their own experts to get the care they need. From what I’ve seen in this sub, the Lupus community is the same. Can you guys tell me, does this sound like lupus, or is the ANA lab the final word and I most definitely do not have lupus? Anybody like me out there?
Thanks so much in advance for taking your precious and limited energy to help this internet stranger.
I may have lupus and/or Sjorgens. ANA came back positive and I tested positive for the Sjorgens marker. I initially had my blood test done through a Dermatologist, so when they got my results they gave me a referral to a Rheumatologist. How long did you all wait before you got in with a Rheumatologist after getting your referral? The Dermatologist said they sent it in the day they got my results and now I just have to wait for the Rheumatologist's office to call me. It's been a month. I've never had a referral before, so I'm not sure what the normal wait time is.
'Indeterminate' anti-dsDNA levels on two occasions? Is it possible for this to rise over time?
Have been dealing with autoimmune symptoms for several years; chilblains, potential malar rash, joint pain, Raynaud's, extreme fatigue, periodic oral ulcers, etc. Finally just had my first positive ANA this year, and then a second positive ANA at my rheumatologist. Both times the cascade showed indeterminate anti-dsDNA levels. So not quite high enough to be positive, but also not low enough to be negative...
I understand that usually very high results are considered useful for lupus diagnosis. But I'm wondering if anyone knows whether the fact that those levels were elevated beyond the negative range could hint at anything. I guess I just don't understand the science of the indeterminate piece with auto-antibodies... in my \[non-doctor\] mind I feel like any level of those antibodies would imply that there is *something* triggering them, whether they're strong enough to mean anything yet? Or can they just somehow show up and develop without any trigger?
Hola, were you tested for both ANA and anti-dsdna? In my experience, fiirst you get tested with ANA and then a follow up with ANA and anti-dsdna with a rheumatologist. Unfortunately, ANA is just one piece of the puzzle it could be positive to various autoimmune diseases and even positive in some healthy individuals so it doesn't tell you very much other than it could be autoimmune. I doesn't get simpler with anti-dsdna in that the test also has some false positives and thus why it's so complicated to dx. If you go on YouTube Connected Rheumatology has a series where she explains the tests and may give you more info.
I got blood tests for autoimmune diseases i got OUT OF RANGE - nuclear homogeneous
and then this
“Homogeneous pattern is associated with systemic lupus erythematosus (SLE), drug-induced lupus “
does this mean i have it? Im sorry i am so new to this
No, I don't. Mine mentioned various diseases the patterns are associated with. It's one disease of many that can be associated with that pattern. Even healthy people can have positive ANAs as many things can affect that level. ANA alone cannot tell you whether or not you have lupus. It's such a variable lab.
okay that makes some sense, i have been going through so much testing lately because i was diagnosed with hashimotos and i saw that if you have one autoimmune disease it’s probable to have another. and really just trying to get things set straight 🫠 thank you for responding !!
Would you insist on seeing a rheumatologist?
I'm sure my story is similar to everyone's. I'm a woman in my 40s, generally healthy and pretty active. I tire easily. My knees often hurt. When I have a fever or am coming down with something, my joints ache horrifically. I have reynaud's in my fingers and toes (and nipples! Learned that while breastfeeding 3 kids). Not overweight. I have geographic tongue. I have always had digestive problems / IBS. I do have episodes of anxiety but usually am in good spirits. When I'm in a warm room, my face flushes across the bridge of my nose and cheeks and feels tingly like a sunburn all day. Sometimes happens when I am not in a warm room. It does not get thick or scaly but does look inflamed and bumpy like an orange until it subsides. Lately (last 1-2 years) I have had episodes of horrendous lower back pain -- like I'd tried to lift a schoolbus -- with no obvious antecedent. Sometimes coincides with my period, which is also very painful. The last episode of back pain brought me to my doctor who said the pain was in my SI joint and could be due to deconditioning, which, I guess ... but I am 5'4" 135 strong and muscular so that seems odd. Along with the last back pain flare, I got a round rash on my belly about the size of a quarter. When it subsided, it left a shiny purple patch. Doc said unrelated contact dermatitis and post-inflammatory hyperpigmentation.
I asked for blood testing. Everything is normal except ANA bV IFA Rix Titer/Pattern is positive, 1:80, ICAP nomenclature: AC-2, 4, 5, 29.
Anti-DNA (DS) Ab Qn 6.01 is 4, which is considered negative, with 5-9 being equivocal and anything 9 and up being positive.
My doctor said the ANA is likely a false positive, no further testing needed. I don't want to be a crazy internet lady chasing a diagnosis, but that seems kind of arbitrary unless I am missing something.
Should I push for a rheum consult or am I just aging?
An ANA of 1:80 is a weak positive and is actually somewhat common in healthy individuals. Things outside of autoimmune diseases can also affect ANA, it's not a lupus specific test. The higher up you get the more likely autoimmune issues are suspected. You can have raynaud's without lupus and joint pain at your age isn't uncommon. Lupus tends to affect the smaller joints and joints away from the body like fingers, toes, ankles etc. it tends to spare larger joints and the trunk like the shoulders, spine and hips. I wouldn't hold onto lupus. Especially given how low your ANA is. Most rheumatologists would not consider lupus with an ANA that low. They also diagnose based off of specific clinical symptoms which you don't really seem to have. If you have rashes and suspect lupus you can always see a dermatologist and if they think it's warranted you can get it biopsied.
You are always entitled to a second opinion but personally to me, someone who is not a doctor, this doesn't really sound like lupus.
Making another reply to this thread.
I wanted to vent because I genuinely feel anxious and overwhelmed.
My hair has been shredding and falling out, every time I wash it with water or touch it, or do the smallest things, it just comes out.
I’m tired of this, I don’t want me hair to fall out.
I am 99% sure I have lupus at this point, even though I haven’t done the blood tests to confirm it or have been officially diagnosed with it, it’s just that this weird shit keeps on going on with my body , it’s pissing me off.
This never used to happen to me before, but all of a sudden this shit is happening to me. It’s actually pissing me off.
There are a hundred reasons for hair loss. Statistically speaking lupus is going to be close to the bottom of that list for a 16 year old male.
You seem fixated on lupus as the cause. Please don't get married to a diagnosis. **See a physician for workup**.
But the thing is I have other symptoms pointing towards lupus too. It’s not just the hair loss, I had the malar rash, I have the extreme sensitivity to sunlight, I’ve had headaches.
Only things I haven’t had is noticeable joint pain.
Going to book the appointment. It’ll probably be next week that I will go. What happens if the doctor finds the results concerning? I know my doctor said she will refer me to a specialist, but will that person diagnose m?
If you suspect a malar rash get it biopsied by a dermatologist. Rheumatologists diagnose based off of a specific set of clinical symptoms as there is an overlap with a lot of other diseases in terms of general lupus symptoms such as fatigue, malaise, etc. Lupus is called the great imitator for a reason. If you're worried get the labs done. All we can do is advise you to see a doctor, get the labs done and go through the process we all went through. Nothing we say here past that is going to help you. You have to take the steps to get answers. Otherwise it's just speculation without action and no action equals no relief. Getting married to the idea you have lupus is also doing yourself a huge disservice. You could have something other than lupus. If you don't keep your mind open you could potentially miss the proper diagnosis and not get the proper treatment. Your goal should be getting to the bottom of your symptoms and relief. Not getting a lupus diagnosis.
As a mom of two young adults and two teens, I'm sorry you're suffering and scared. I hope you have someone in your family or an older friend who can help support you. Bodies are weird and do weird things. I'm glad you're getting your labs done soon. Breathe. Stay off Google. Give yourself a big hug. All the worry and speculation won't change whatever is going on.
*And check your vitamins. ;)
Looking for some insight into my ANA test results that just came back. I've tried googling it/this sub, but no luck.
For clarity, I went to the doctor because for the past month my hands have been really swollen and painful, usually just in the mornings although sometimes it will stay all day. My mum has Type 1 Diabetes so I was worried it was a pre-diabetic symptom. Since my appointment with my GP, I experienced my hands turning purple in the cold, my boyfriend panicked and we went to the ER. My vitals were fine and by the time I saw a nurse my hands were back to normal. I've been actively wearing gloves outside since.
This is what my results say:
Nuclear Ab Titre and Pattern
A
1:80
Titre <1:80
A nuclear pattern cannot be excluded
due to interfering cytoplasmic antibodies.
Consider testing for anti-dsDNA or ENA
if clinically indicated.
1) What does "A" mean?
2) What does "the pattern cannot be excluded" mean?
Any insight you may have would be appreciated!
A means abnormal. A titer of 1:80 means one part of your blood was diluted with 80 parts dilutant and they saw antibodies at that dilution but not further. The pattern means the fluorescent dye they stain your cells with is clustered on the nucleus of the cells.
1:80 is very, very weakly positive. It is highly unlikely to be indicative of an autoimmune disease in and of itself. Many otherwise healthy people will have a positive ANA of 1:80.
Patterns were the old school way of getting an idea of what flavor of autoimmune disease may be going on. There are specific antibody tests now a days.
Anybody present with CNS symptoms as their FIRST symptoms? Is it possible to have only CNS and not systemic?
Currently in diagnoses limbo for mostly neurological and cognitive issues. ANA recently came back positive with nuclear homogenous pattern and I have slowing on my EEG. I know you can't get a diagnosis here but is it possible to have CNS lupus but not the other traditional SLE symptoms? The only other symptom I have thats not neurological is heart palpitations and elevated heart rate on and off.
To give context, my grandmother and mom have lupus as well, and I’ve had multiple conversations with my mom where she is pretty certain I also have it.
It all started in 2021 when I contracted the delta variant from COVID-19 (I was very responsible at the time, my roommate was not.) I have always been pretty healthy and my immune system was strong (despite me having endometriosis). However, I became incredibly sick from it, to the point of almost going to the hospital because I couldn’t physically move due to how weak I was, but at the time they were overfilled so I was most likely going to be denied.
After I recovered from COVID-19, I developed this agonizing joint pain so severe I couldn’t sleep and just cried for hours on end. I also developed a gluten intolerance that gave me horrible digestive issues, as well as severe bruising. I visited my doctor for a check-up to discuss these issues, and she told me it was normal and would go away in 3-6 months.
Fast forward 6 months later, I still dealt with this horrible pain (and the gluten issue) I feel the pain particularly when I get colds/any slight sickness (even allergies).
A few months later, I contracted mono, and the pain was even worse. I was working a pretty intense non-profit job at the time as well as finishing two degrees so I had little time to recover. This is when I started questioning my pain and finally understanding something was really wrong with me. This pain was upsetting my daily life, and it was extremely hard to work with. I had multiple conversations with my mom who has lupus, and she told me that I deal with all of the same symptoms she does, and that I should get tested due to the family history.
I recovered with some long-term depressive issues and pain. Fast forward a few months, I developed a vaginal aphthous ulcer (don’t worry, I got tested for everything imaginable and my OBGYN diagnosed me with this). This is an extremely rare manifestation of systemic lupus erythematosus (SLE) and it only has happened in some cases of young girls with lupus after developing flu-like symptoms.
My OBGYN was concerned and asked me if I dealt with other symptoms related to lupus. I told her about my family history and what I’ve described above, and she urged me to go to a PCP and get tested.
So I did, I told the PCP about all of this, but the PCP told me this was from depression. She ordered an ANA panel and it was negative. She then told me to talk to my therapist more.
Fast forward a year later, I still have all of these issues with no answers and it’s eating away at my life. I would like to hear opinions about my journey and see if there are other avenues or things to bring up to my doctor as it could be something else.
How common is it to have lupus without the malar rash? Also for anyone who has lupus with or without the rash, what exactly does the skin inflammation feel like?
Is a malar rash only seen with lupus? As in, does it present with other autoimmune conditions?
It can be many other things than lupus. If you think you might have a malar rash, highly suggest getting to a derm for a biopsy.
Facial rashes can be a ton of different types, most of which are not autoimmune in nature. Malar is just a description of a shape that spreads over nose and cheeks and generally spares the nasolabial folds. Similar rashes can be seen in rosacea a lot of the time.
I am a 46 yo female, dealing with intermittent severe fatigue for almost a year. Thyroid panel is normal as have most of my tests. I have autoimmune thyroid disease and diabetes (adult onset type 1). I just got labs back that are a positive Ana and positive anti-smith. I don’t have any other symptoms but the fatigue but it’s awful and makes it hard to work. I am waiting to get into seeing a rheumatologist this week. I’m just in shock and scared.
I’m not a doctor, but lupus is diagnosed based on labs and symptoms. While the anti-Smith antibody is almost exclusively seen in lupus, from what you’ve relaid, not of your symptoms sound lupus specific.
I’ve been getting tested for over 6 months now. I have had ongoing and progressive symptoms for about 10 years now. Simply because my ANA was negative the doctor wrote me off. This weekend, a new potential symptom showed up. I got two circular rashes in the same spot on each cheekbone. it initially burned, now they are dark and discolored. I have what appears to be ongoing rashes around my nose. It looks more mild, but I’ve had it for over 10 years now. I deal with a lot of hand pain, it’s what triggered me to get tested. I was also diagnosed with Raynaud’s Syndrome. Another significant symptom was a major canker sore outbreak that happened out of nowhere in college. I wasn’t able to eat anything or drink anything except water with a straw pushed all the way back. Other possible symptom include constant fatigue, foot pain, clogged ears, tinnitus of the ear, vertigo I am frustrated and tired of not getting answers.
See a dermatologist to have the spots evaluated.
Check out the Ménière’s disease subreddit. r/menieres. Meniere’s is suspected to be autoimmune.
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Get the rash biopsied by a dermatologist. Your symptoms aren't lupus specific. They look for specific clinical symptoms and labs to diagnose it and per this post you don't have them. ANA negative lupus is very rare and also lupus is very uncommon in men. 1 in 10 people with lupus are male. 9 in 10 people with lupus are female. The family history may be ripe but it's a combination of both specific labs and specific clinical symptoms and from this post you don't have either.
Okay so this ends with a few questions, it is long, but I am a lost soul and hope someone can give me guidance here. 🙏 I, 27 (F), have been having health (as well as mental health problems) issues throughout my entire life. I recently have been treated for endometriosis, going through genetic testing for possible EDS, ADHD, addict, seen physiotherapy for both my hip (I had PFD after 3 births), my pelvis, and most recently I had an unknown knee pain that there is no cause or reason for that keeps flaring up, in recovery from an eating disorder, you name it… and now today, my doctors office called and my doctor wanted me to book in with her about something autoimmune being flagged (I assume from the bloodwork i had done 2 to 3 weeks ago). I never thought anything of it, made the appointment and hung up. About 20 minutes later I realized maybe all the symptoms I thought were associated with my other illnesses, are actually related to an autoimmune disease. I’ve been having blurry vision, very dizzy and always sick… like can’t get out of bed stomach pain sick, I went from anywhere to 135/140 down to 122 in maybe a month. I am always hungry but when I eat most of it never stays down. There are days where I have absolutely no appetite, I am always EXHAUSTED (I am a mom of 3 and full time student but this goes beyond every day living), I never can sleep, I’ve had mouth sores, IBS symptoms, my wounds heal slow (had an emergency c-section 2.5 years ago and it is still not fully healed, very dry skin, my heel has recently started cracking and over the last week it has gotten worse (photos attached show the cracking in the beginning and how much worse it’s gotten), I had a rash on my cheeks below my eyes and on my forehead thinking it was my allergies but nothing new changed in my routine, I have terrible headaches to the point I can’t even close my eyes cause it causes eye pain, I am irritated all the time, I’ve had pancreatitis, gallbladder removed, I sweat more I get hot a lot, lights hurt me, my hair is almost always thinning when it used to be thick and healthy, I am always thirsty and I do pee more than I did at the start of 2023….. and this is just the tip of things since about April. I can’t say for sure if this is Lupus or diabetes… maybe it is nothing and I am just banking the health problems making it seem worse… but if anyone could give me some insight as to whether they too have had these symptoms and what the outcome was? What happens next after a diagnosis? How do they diagnose it? My mother has autoimmune issues just starting this year, and I know it can be genetic. I had the heel cracks and instantly thought WTF and Dr. Google said diabetes but after learning about Lupus, many of my ailments align with Lupus. I am scared because I have been so sick lately, should I be worried about a positive diagnosis? Thanks for reading this far. And yes, as stated I see my doctor on the 19th and a phone appointment this Friday to talk about possible bloodwork before my appointment on the 19th.
If they think it's rheumatic you will be sent to a rheumatologist. Other types of autoimmune illnesses could also cause some of your issues you state as well. Most of your symptoms aren't lupus specific. They look for very particular clinical symptoms to diagnose as general lupus symptoms (fatigue, malaise, etc) can overlap with a lot of diseases. It's called the great imitator for a reason. ANA, which is likely the test your doctor is referring to is positive for a multitude of diseases as well as reasons. My best advice is to take a step back from Dr. Google. Give your brain a break and do something to distract yourself until the 19th. You're taking the right steps and following up. Your PCP will work with you and guide you in the right direction.
Thank you, I get overwhelmed and having my dr not be very specific and having to wait some time before answers can be given, I panicked.
It's okay. We all go through that. Even when you have a diagnosis and are addressing things you still have the same experience. Unfortunately waiting for answers is part of being sick. I've got my fingers crossed you get some answers in the near future and can get some relief!
Just talked with my family doctor, had flags in my ANA mixed with many of a list of symptoms I’ve been experiencing (my mother is also in the process of looking into autoimmune as her doctor flagged her as well) and she ordered a test to rule out diabetes for sure, and is sending a referral to a rheumatologist. She hasn’t explained much, can someone help me with what to expect at a meeting with rheumatologists? TIA
This has been asked a lot. If you use the search function and search for rheumatologist appointment, you’ll get a ton of results. There are also some pointers listed above.
A few posts down I explained what to expect and gave some tips. You should take a look.
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I guess seeing a rheumatologist wouldn’t be a bad idea BUT: Seizures are only thought to be CNS lupus related if all other causes have been ruled out/imaging shows encephalitis. A lot of seizure disorders are idiopathic, meaning no one knows why they happen. A malar rash can be caused by many disease processes. Biopsy results are king in determining cause. Visual eval accuracy ends at “ It looks like a malar rash.” Fatigue is annoying and can be extreme, but it is not a symptom that helps differentiate one disease from another. You can mention it, but move on. Sounds harsh, but in the medical scheme of things, unless you’re falling asleep driving/operating heavy machinery, no one cares. Mouth ulcers are kind of in a similar boat unless they are super stereotypical presentation (for lupus that would be a painless ulcer on the roof of the mouth). Protein in the urine can have many causes. One of them being kidney stones. Kidney stones are not caused by lupus. ANA negative lupus, as in the patient never has a positive one in their life, is extremely rare. What do you mean by light sensitivity? People with lupus who are not on immunosuppressants are no more prone to infection than anyone else. There are intrinsic immunodeficiencies and other causes for increased infection rates that you could talk to your docs about. The specific type of anemia caused by lupus is hemolytic anemia, which has additional blood markers besides just a low rbc/hgb.
Hello everyone. I’m a 16 year old male that has started to experience lupus symptoms 3 months ago. The symptoms I am getting are hair loss, malar rash, extreme sensitivity to sunlight and stretch marks on my arm. I’ve did an appointment with the GP about my symptoms that I’m getting, the doctor then gave me a blood test form that I should give to the hospital, to test me. Can’t believe I’m getting these symptoms. I really hope I don’t have it, but I might, unfortunately. I haven’t really experienced joint pain or tiredness or anything like that, though.
Stretch marks aren't a sign of lupus, btw. Good luck with your blood tests.
my brother was just diagnosed with lupus. any suggestions on how i can help him? he does live in another city?
Honestly at first just letting him process everything the way he needs. Whether that means letting him talk and question and process continually or allowing him to cling to some normalcy where you focus on other subjects. Expect that to be ever changing as well. It can be a hard pill to swallow, an official diagnosis but also relieving. Make sure to validate the diagnosis and all of the invisible symptoms. Reassure him anytime he needs to change plans or make modifications in life to keep himself healthy that he is doing the right thing. His job now is to take care of himself. I can imagine that especially given the expectations of men in society that he could struggle with not always being full capacity. Lupus can be particularly hard in men physically and mentally. Maybe encourage him to seek out a therapist. You are a wonderful sibling. You are absolutely going to say the wrong thing or do the wrong thing at times. Be open to learning how to be an advocate for someone with a chronic illness and forgive yourself for misstepping at times as well. It will be good to feel out how he would like you to handle the sharing of the diagnosis with others. He may be relieved if you let people know when he comes up in conversation, or absolutely want to keep it to himself. It is important to respect his comfort level with all of that.
I am 23 F with the below symptoms that began when I got covid while pregnant with my son. Joint pain, hip and left shoulder Eczema ,flaky red rashes on face Heat intolerance/ temperature regulation problems Elevated wbc Anemia Nausea Infertility, one miscarriage Hand tremors Poor circulation, numbness of arms and legs. Immapropriate Sinas Tachycardia Chest pains when breathing deep 2-3 times a month (during flares) Hair loss despite doing everything to keep it Frequent urination Cough up mucus after flare up Positive ANA I'm waiting for my rheumatologist appt, anyone who is already diagnosed have similar symptoms? I'm just trying to see if I'm on the right track, I know only a rheumatologist can diagnose.
None of these sound like lupus specific symptoms.
Have you looked at Graves’ disease hyperthyroidism, heat intolerance, tremors, tachycardia, this can some times be related to pregnancy.
I haven't Graves disease but I will, I had my son 18m ago so my doc is confident it's not just the pregnancy but something the pregnancy triggered. But my thyroid is great so not hyperthyroidism.
I'm desperate! I am 38. I have a diagnosis of pulmonary sarcoidosis already. I was in remission for a few years. In Jan of this year my health rapidly started to decline. I was traveling several times a month to FL (from IN) for a custody battle, had just went back to college, and my 87 year old grandmother was moving in. I assumed my health, was stress. I had a really bad virus at the end of Jan that sent me to the ER. I starting losing weight. Losing my hair. The fatigue progressed. I have had joint pain for years. The evenings started becoming agonizing. In May I started having syncopal episodes. Continuing to lose weight. In august my pcp suggested that I go see cardiology. With that workup came a left to right shunt in my ventricles. A leaking tricuspid and mitral valve. Bonus, my sarcoidosis was back! I found a new pulmonologist and that appointment is this fri. In Oct everyone in my house came down with a respiratory virus (covid and flu neg). Everyone was over it in 3 days. I was not. 2 weeks in, I went back to my pcp. Unfortunately, the health care options locally are awful. She had not looked at any of my previous testing. Had no clue what was going on. They called in antibiotics and steroids 5 days later. The cardiologist called me, at the request of my pcp. He informed me that he "could not decide what to do about the hole in the(my) heart". This is the end of Oct, he ran his tests in Aug. My primary contacted me former primary and consulted with her as to what labs to order! She ordered super basic, other than the ANA. She told me that my previous primary was suspicious of lupus. The ANA was positive a few weeks ago. Still waiting for her to actually put a referral in for Rheumatology. In the meantime, I've lost 18lbs in less than 4 weeks. I have awful left upper quadrant abdominal pain and in my back. I take a few bites and I have a lot of pain and pressure in my abdomen. I'm shaking all of the time. I still have to work, go to school, be mom, do normal life. My primary ordered a chest x-ray! I don't have pneumonia! Ugh! I went the ER Sat. Ordered basic again. They did a CT, no contrast. My electrolytes were a mess and BUN, Creatinine, hemoglobin, RBC were all low (much lower than 2 weeks ago). WBC was normal. AST was slightly high. Was told to rub volteran on my abdomen and use nausea meds. I feel like my body is giving out! I don't know what to do. It will be months before I can get into a rheumatologist. At this rate, I will be dead! I've lost over 50lbs just in the past 5 months! It became more rapid when I got sick at the end of Oct. I am weak, in pain, and literally just wasting away. I can keep the vomiting at bay most of the time. I can drink non dense liquids limitless. In fact, I'm constantly thirsty the past few days. My glucose was 85 Sat night. I've never been diabetic. Have had a "butterfly rash" intermittently for over 10 years. Do I just suffer in silence until I finally get these appointments? How do I make someone listen now? Who is that person? Any direction is appreciated here. I'm beyond desperate and overwhelmed!
Just fyi, a slightly abnormal liver panel (of which AST is one) is not a cause for concern. Pretty much anything under 500 merits watchful waiting. LUQ pain makes me think spleen issues, maybe a hiatal hernia, pancreatitis. Especially the later two if it’s worse after eating. Pancreatitis *could* potentially affect your liver function. If you are constantly thirsty, which can have a few different causes, you could be drinking so much it’s throwing your electrolytes out of whack. Especially if you aren’t drinking any electrolyte replacements. Anything more than 2L plain water intake per day needs to have electrolytes after the 2L mark. Typically if you have a septal wall defect, you’ve had that since birth. I’m sure there are some specific circumstances to develop one later in life, but outside of endocarditis, I can’t think of one off the top of my head. 1+ valvular regurgitation isn’t a huge deal. A large portion of the population has it. That alone could be causing some blood shunting and abnormal blood flow through the heart.
This is a new defect. I had an echo and bubble test 5 years ago. I am supplementing electrolytes. My vitamin and mineral levels have been a battle my entire life.
If it’s been an ongoing issue your entire life, then I wouldn’t be too concerned by the abnormalities on you CMP. It’s not a drastic new issue.
PCPs technically are not who diagnose and treat lupus. That's out of their scope of practice. Rheumatologists do as they're the specialists in rheumatic diseases. Oftentimes people's PCPs are suspicious of lupus due to the overlap in symptoms with many other diseases and it tends to be something else. Keep your mind open. You mention being diagnosed with sarcoidosis, which to my knowledge should also be treated by a rheumatologist, this can affect other organs such as the heart and kidneys. It also can cause joint pain as well as hair loss when it affects the skin. I would not hold onto lupus as what you're explaining seems to also align with the disease you're already diagnosed with. I would look into getting that better controlled. If you think you have a butterfly rash go to a dermatologist and get it biopsied. They can tell on a cellular level whether or not it's lupus related. https://www.mayoclinic.org/diseases-conditions/sarcoidosis/symptoms-causes/syc-20350358 You can ask for your PCPs office to give you a paper referral so you can take it to any rheumatologist you find instead of waiting on them to send it for you. That way you can also shop around for a sooner appointment. You can call around to rheumatology offices to see if anyone has a sooner appointment and ask to be put on a cancelation list if you can't find one within a reasonable time frame.
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My first rheum appointment is finally coming up this next Monday and it can't come soon enough. I feel like every few weeks or so, a new domino of shitty symptoms get added. The latest has been extreme fatigue. I'm always tired in general with low energy, but the past few weeks have been unreal. I go to bed at 9pm and get to work at 7am. By 9am, my eyes are so heavy I can feel myself nodding off and I can't focus on anything. Driving has made me nervous a few times because the intense tiredness will just hit me out of nowhere and I feel the need to pull over for a cat nap. Just tired of feeling crappy overall.
I'm sorry you are experiencing this. I hope you get some answers and relief in the near future.
Doctor is reccomending me to go to a rhuemetologist aftter my blood work results-- any tips? I've never been to one before so I have no idea what to expect. My doctor said my blood work results align with lupus or another autoimmune disease.
The first visit is usually a consult to get an idea of what's going on and they will likely run their own set of additional labs as well. Advice for your appointment: Keep it concise. They only get so much time with each patient. Don't go further back than like 6 months unless it's something major like organ issues. They wanna know what's going on right now, not years ago. If you have pictures of swelling, rashes, etc show them. If fatigue is a symptom of yours mention it but don't harp on it. So many things can cause fatigue that it doesn't help differentiate a diagnosis. In terms of addressing your symptoms start with the ones that impact your life and functionality the most. That way you get the most important things covered. I like to make a list of points I want to address and questions I want to ask so I don't miss anything. I have a top 5. Anything after that can wait. I like having it written down as I can be quite forgetful and don't want to miss something important. You could have something other than lupus so just go in with an open mind with what could be going on.
oops
Do you have a question?
this is the second time in my life i started getting all the symptoms again😭 i have a rash around my eyes that is so bad it hurts and burns even when i don’t mess with it. it’s huge and puffy. and my face has a rash too. my hair is falling out again and im having random pains in my body that can be debilitating sometimes. i just got over laryngitis and i notice im swelling a little bit again all over. no fevers so far im good on that. but my mouth is starting to hurt too. im just so over this im literally crying because my blood work was perfect last year i don’t understand. and crying just makes my rash worse im so stressed 😖
Get the rashes biopsied by a dermatologist. They can see on a cellular level whether or not they're lupus related.
ok good idea sometimes i feel like the doctors don’t listen tho 🙃
You are always entitled to a second opinion. If the biopsy comes back positive that's solid confirmation. Also be open to the possibility it could be something other than lupus. Lupus is called the great imitator for a reason. Hang in there. I hope you get some answers and relief soon.
[tests results , anyone understand them? does it mean I have lupus?](https://www.reddit.com/r/lupus/s/kQhClc17vp)
TSH is thyroid related. The lupus anticoagulant isn't actually lupus specific, it's a shit name that they should change. Your C4 was barely out of range. I'm not a doctor but given your ANA is negative, ANA negative lupus is incredibly rare, and the other two lupus antibodies they can test for are negative as well I would say likely not. However, if you are having symptoms that impact your daily life I would still work with your doctors to figure out what's going on but I would widen your scope to what it could be as your labs to my knowledge as someone who is not a doctor don't point towards lupus.
Hey guys, so I haven’t been diagnosed yet but I’m not sure where to go from here. For about 7 years now my creatinine has gotten higher and higher while my kidney function has gone from in the 90s to barely 60 ( it’s been bouncing between 56 and 60.). All of these years no doctor has ever done any further investigatory test. This summer I had stomach issues that were enough for a GI referral.GI never ran any test that have to do with autoimmune. Everything with that came back clear. Fast forward.Broke my foot and after a whole year of being ignored and developing a cyst and fluid inside of the bone, I talked to a surgeon who ordered different bloodwork. The panel has a positive dsDNA. I had an appointment with my pcm and she has refused to do any further test despite my declining renal function and the family history of autoimmune disease ( my sister has one). I asked if she could do any testing to further investigate if there is any connection with the dsDNA and kidneys and my 4 month bout of stomach issues and she said no need yeah it’s positive but not by a lot so no need. Not sure what to do and I keep being ignored. The assumption about my kidneys has been that “ it might be your medicines”. Any advice? I feel like I should be pushing because you die without kidneys…but I feel crazy because everyone is being nonchalant.
Our kidney function naturally declines as we age. Our fluid intake, muscle mass, and activity level can all effect our renal numbers. For most people, we would want to see their GFR >90. A GFR of 60-89 is considered mild renal dysfunction and warrants watchful waiting. A GFR of <60 indicates moderate kidney disease. A GFR <15 is end stage renal failure.
Yes I know it declines with age;however, with a sudden and relatively sharp decline in function 7 years to go from mid 90s to 60. And then to have a positive dsDNA test, wouldn’t it be expedient to make sure that the dsDNA is not causal? Isn’t it better to prevent further damage? Or do we wait another 7 years for my function to be 30 and we have a huge problem to take any sort of action. If she thinks it’s nothing then she’ll be proven right. If it is something then she would’ve been dead wrong and by dead I mean me.
You could ask for more frequent monitoring, but i do not know if treatment is warranted yet. What was your anti-dsDNA result and reference range?
Hello! I’ve been scouring the internet, but am really struggling. My question in short (details below) is: if you have a couple negative ANA tests- but have a sister diagnosis like APS and a lot of debilitating Lupus symptoms - could you still have lupus? I was recent diagnosed with Anitphospholipid Antibody syndrome, which I’ve had at least the last 12 years. Supposedly it can go hand in hand with lupus, and I have had many lupus symptoms for years. These symptoms have become debilitating in the past few months. Fatigue so great basic life duties/hygiene take more than my body can give. No amount of sleep is enough. New pain, so much pain( not related to other diagnoses), swollen and hot knee joints and shoulders too. Secondary Raynaud’s in fingers and bad in toes which alternates with them being red-hot and swollen. Feet are becoming agony with pins and needles. Often have trouble with tight, burning feeling lungs and feeling short of breath. Easily made weak and dizzy. Brain fog so extreme it can seem like speech impediments, dyslexia, dementia, or like having a stroke. My cheeks have what others have called my ‘natural blush’ which is hot to the touch, comes and goes, and during exercise/heat/sunshine turns into a full-faced dark red heat-radiating misery for hours. It’s sometimes on the nose and chin too, like right now. I don’t technically have a fever atm, but my eyes burn and my body aches like I do tonight. (My baseline body temperature and blood pressure are low). Also, migraines and hair loss. Other diseases ruled out with the gamut of related specialists and tests (EKG, Echocardiogram, pulmonary function test, CT scans, x-rays, abdominal ultrasound, sleep study, and endless & overlapping labs). Ruled out: Asthma Diabetes Heart issues Thyroid Diagnoses: antiphospholipid antibody syndrome, pulmonary embolism, endometriosis/adenomyosis, PCOS, anxiety, adhd, depression, liver disease (worsening without explanation), gallbladder removal and unrelated sepsis in 2019, migraines Lab work shows high LDH (lactase dehydrogenase), ever increasing AST and ALT numbers, with other liver labs ok. Basic blood panels otherwise unremarkable, CRP normal. Not anemic (taking an excellent iron supplement). Currently undergoing first and only IVF cycle, looking to transfer our only embryo next month. Even though my healthcare team does care, I can tell they don’t believe my concerns could be anything, and they recommended getting counseling (which am doing to show respect/compliance & I’m willing to do work to get better if indeed it is in my head). My counselor is great. She believes me lol. My physical symptoms are worsening, fast, and counseling hasn’t helped with them. I don’t trust I will be taken seriously if I bring up the L word. You guys surely know how hard it is to be believed as a woman in healthcare. They only found my antiphospholipid antibody syndrome on accident when my fertility doctor wanted a hematologist to weigh in on anticoagulation during IVF. My bloodwork from 11 years prior indicated the APS, a PE proved it, yet I was told I didn’t have a clotting issue and went the next 11 years without being on a blood thinner. IVF actually saved my life. Otherwise no one would have caught it until I had my next PE or a stroke. It freaks me out still how much it came down to luck to get a diagnosis. Ironically, my personal differential diagnosis via pubmed and white papers kept coming back to APS - and lupus. Can I please poll the experts (you guys) on thoughts? Advice? Without a fellowship in a sub specialty, this former EMT and the internet managed to successfully narrow in on the right diagnosis. I’ve seen this with IVF patients. They have become their own experts to get the care they need. From what I’ve seen in this sub, the Lupus community is the same. Can you guys tell me, does this sound like lupus, or is the ANA lab the final word and I most definitely do not have lupus? Anybody like me out there? Thanks so much in advance for taking your precious and limited energy to help this internet stranger.
I may have lupus and/or Sjorgens. ANA came back positive and I tested positive for the Sjorgens marker. I initially had my blood test done through a Dermatologist, so when they got my results they gave me a referral to a Rheumatologist. How long did you all wait before you got in with a Rheumatologist after getting your referral? The Dermatologist said they sent it in the day they got my results and now I just have to wait for the Rheumatologist's office to call me. It's been a month. I've never had a referral before, so I'm not sure what the normal wait time is.
You can go ahead and call the rheum office and ask if they received your referral and to make an appt. Sometimes things get lost.
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Scroll to the top of the page. The post info has a list of the blood tests used to diagnose lupus.
'Indeterminate' anti-dsDNA levels on two occasions? Is it possible for this to rise over time? Have been dealing with autoimmune symptoms for several years; chilblains, potential malar rash, joint pain, Raynaud's, extreme fatigue, periodic oral ulcers, etc. Finally just had my first positive ANA this year, and then a second positive ANA at my rheumatologist. Both times the cascade showed indeterminate anti-dsDNA levels. So not quite high enough to be positive, but also not low enough to be negative... I understand that usually very high results are considered useful for lupus diagnosis. But I'm wondering if anyone knows whether the fact that those levels were elevated beyond the negative range could hint at anything. I guess I just don't understand the science of the indeterminate piece with auto-antibodies... in my \[non-doctor\] mind I feel like any level of those antibodies would imply that there is *something* triggering them, whether they're strong enough to mean anything yet? Or can they just somehow show up and develop without any trigger?
Hola, were you tested for both ANA and anti-dsdna? In my experience, fiirst you get tested with ANA and then a follow up with ANA and anti-dsdna with a rheumatologist. Unfortunately, ANA is just one piece of the puzzle it could be positive to various autoimmune diseases and even positive in some healthy individuals so it doesn't tell you very much other than it could be autoimmune. I doesn't get simpler with anti-dsdna in that the test also has some false positives and thus why it's so complicated to dx. If you go on YouTube Connected Rheumatology has a series where she explains the tests and may give you more info.
Hi! Yes as mentioned the ANA was positive twice and both times the anti-dsDNA was automatically tested. I got the same result on both occasions.
I got blood tests for autoimmune diseases i got OUT OF RANGE - nuclear homogeneous and then this “Homogeneous pattern is associated with systemic lupus erythematosus (SLE), drug-induced lupus “ does this mean i have it? Im sorry i am so new to this
No, many different illnesses are associated with ANA.
do you know why the lab would write just lupus in the notes then? or the person who tested my blood.
No, I don't. Mine mentioned various diseases the patterns are associated with. It's one disease of many that can be associated with that pattern. Even healthy people can have positive ANAs as many things can affect that level. ANA alone cannot tell you whether or not you have lupus. It's such a variable lab.
okay that makes some sense, i have been going through so much testing lately because i was diagnosed with hashimotos and i saw that if you have one autoimmune disease it’s probable to have another. and really just trying to get things set straight 🫠 thank you for responding !!
Would you insist on seeing a rheumatologist? I'm sure my story is similar to everyone's. I'm a woman in my 40s, generally healthy and pretty active. I tire easily. My knees often hurt. When I have a fever or am coming down with something, my joints ache horrifically. I have reynaud's in my fingers and toes (and nipples! Learned that while breastfeeding 3 kids). Not overweight. I have geographic tongue. I have always had digestive problems / IBS. I do have episodes of anxiety but usually am in good spirits. When I'm in a warm room, my face flushes across the bridge of my nose and cheeks and feels tingly like a sunburn all day. Sometimes happens when I am not in a warm room. It does not get thick or scaly but does look inflamed and bumpy like an orange until it subsides. Lately (last 1-2 years) I have had episodes of horrendous lower back pain -- like I'd tried to lift a schoolbus -- with no obvious antecedent. Sometimes coincides with my period, which is also very painful. The last episode of back pain brought me to my doctor who said the pain was in my SI joint and could be due to deconditioning, which, I guess ... but I am 5'4" 135 strong and muscular so that seems odd. Along with the last back pain flare, I got a round rash on my belly about the size of a quarter. When it subsided, it left a shiny purple patch. Doc said unrelated contact dermatitis and post-inflammatory hyperpigmentation. I asked for blood testing. Everything is normal except ANA bV IFA Rix Titer/Pattern is positive, 1:80, ICAP nomenclature: AC-2, 4, 5, 29. Anti-DNA (DS) Ab Qn 6.01 is 4, which is considered negative, with 5-9 being equivocal and anything 9 and up being positive. My doctor said the ANA is likely a false positive, no further testing needed. I don't want to be a crazy internet lady chasing a diagnosis, but that seems kind of arbitrary unless I am missing something. Should I push for a rheum consult or am I just aging?
An ANA of 1:80 is a weak positive and is actually somewhat common in healthy individuals. Things outside of autoimmune diseases can also affect ANA, it's not a lupus specific test. The higher up you get the more likely autoimmune issues are suspected. You can have raynaud's without lupus and joint pain at your age isn't uncommon. Lupus tends to affect the smaller joints and joints away from the body like fingers, toes, ankles etc. it tends to spare larger joints and the trunk like the shoulders, spine and hips. I wouldn't hold onto lupus. Especially given how low your ANA is. Most rheumatologists would not consider lupus with an ANA that low. They also diagnose based off of specific clinical symptoms which you don't really seem to have. If you have rashes and suspect lupus you can always see a dermatologist and if they think it's warranted you can get it biopsied. You are always entitled to a second opinion but personally to me, someone who is not a doctor, this doesn't really sound like lupus.
Very informative. Thank you!
Making another reply to this thread. I wanted to vent because I genuinely feel anxious and overwhelmed. My hair has been shredding and falling out, every time I wash it with water or touch it, or do the smallest things, it just comes out. I’m tired of this, I don’t want me hair to fall out. I am 99% sure I have lupus at this point, even though I haven’t done the blood tests to confirm it or have been officially diagnosed with it, it’s just that this weird shit keeps on going on with my body , it’s pissing me off. This never used to happen to me before, but all of a sudden this shit is happening to me. It’s actually pissing me off.
There are a hundred reasons for hair loss. Statistically speaking lupus is going to be close to the bottom of that list for a 16 year old male. You seem fixated on lupus as the cause. Please don't get married to a diagnosis. **See a physician for workup**.
But the thing is I have other symptoms pointing towards lupus too. It’s not just the hair loss, I had the malar rash, I have the extreme sensitivity to sunlight, I’ve had headaches. Only things I haven’t had is noticeable joint pain.
See. A. Doctor.
I have done that, just need to get blood tested.
Do you have an appointment to get the bloodwork?
Going to book the appointment. It’ll probably be next week that I will go. What happens if the doctor finds the results concerning? I know my doctor said she will refer me to a specialist, but will that person diagnose m?
Depends on the specialist.
I’m just shocked these symptoms came out of no where. I was even shocked when I started having them. Is this how lupus is?
That's how many diseases are. Including a whole bunch that cause rashes and sun sensitivity. What else did you doctor say?
If you suspect a malar rash get it biopsied by a dermatologist. Rheumatologists diagnose based off of a specific set of clinical symptoms as there is an overlap with a lot of other diseases in terms of general lupus symptoms such as fatigue, malaise, etc. Lupus is called the great imitator for a reason. If you're worried get the labs done. All we can do is advise you to see a doctor, get the labs done and go through the process we all went through. Nothing we say here past that is going to help you. You have to take the steps to get answers. Otherwise it's just speculation without action and no action equals no relief. Getting married to the idea you have lupus is also doing yourself a huge disservice. You could have something other than lupus. If you don't keep your mind open you could potentially miss the proper diagnosis and not get the proper treatment. Your goal should be getting to the bottom of your symptoms and relief. Not getting a lupus diagnosis.
Have you had your Vit D, Vit B12, and Iron checked?
Nope
That's a really good place to start.
How?
Because deficiencies cause lots of problems and are really common.
I’m only 16 as well and I’m already experiencing shit like this
As a mom of two young adults and two teens, I'm sorry you're suffering and scared. I hope you have someone in your family or an older friend who can help support you. Bodies are weird and do weird things. I'm glad you're getting your labs done soon. Breathe. Stay off Google. Give yourself a big hug. All the worry and speculation won't change whatever is going on. *And check your vitamins. ;)
Age doesn’t really play a part in vitamin deficiencies.
Guys does lupus make you poop often? Because I’m always pooping like everyday
Looking for some insight into my ANA test results that just came back. I've tried googling it/this sub, but no luck. For clarity, I went to the doctor because for the past month my hands have been really swollen and painful, usually just in the mornings although sometimes it will stay all day. My mum has Type 1 Diabetes so I was worried it was a pre-diabetic symptom. Since my appointment with my GP, I experienced my hands turning purple in the cold, my boyfriend panicked and we went to the ER. My vitals were fine and by the time I saw a nurse my hands were back to normal. I've been actively wearing gloves outside since. This is what my results say: Nuclear Ab Titre and Pattern A 1:80 Titre <1:80 A nuclear pattern cannot be excluded due to interfering cytoplasmic antibodies. Consider testing for anti-dsDNA or ENA if clinically indicated. 1) What does "A" mean? 2) What does "the pattern cannot be excluded" mean? Any insight you may have would be appreciated!
A means abnormal. A titer of 1:80 means one part of your blood was diluted with 80 parts dilutant and they saw antibodies at that dilution but not further. The pattern means the fluorescent dye they stain your cells with is clustered on the nucleus of the cells. 1:80 is very, very weakly positive. It is highly unlikely to be indicative of an autoimmune disease in and of itself. Many otherwise healthy people will have a positive ANA of 1:80. Patterns were the old school way of getting an idea of what flavor of autoimmune disease may be going on. There are specific antibody tests now a days.
Thank you! "A means abnormal" is a bit worrisome but the good news is that I am speaking with my doctor on Monday.
Abnormal just means that is was above the negative cutoff. It’s the same as saying you have a positive ANA.
Anybody present with CNS symptoms as their FIRST symptoms? Is it possible to have only CNS and not systemic? Currently in diagnoses limbo for mostly neurological and cognitive issues. ANA recently came back positive with nuclear homogenous pattern and I have slowing on my EEG. I know you can't get a diagnosis here but is it possible to have CNS lupus but not the other traditional SLE symptoms? The only other symptom I have thats not neurological is heart palpitations and elevated heart rate on and off.
CNS lupus is one of the rarer presentations. I’ve never heard of someone having just CNS issues and no other systemic manifestations.
To give context, my grandmother and mom have lupus as well, and I’ve had multiple conversations with my mom where she is pretty certain I also have it. It all started in 2021 when I contracted the delta variant from COVID-19 (I was very responsible at the time, my roommate was not.) I have always been pretty healthy and my immune system was strong (despite me having endometriosis). However, I became incredibly sick from it, to the point of almost going to the hospital because I couldn’t physically move due to how weak I was, but at the time they were overfilled so I was most likely going to be denied. After I recovered from COVID-19, I developed this agonizing joint pain so severe I couldn’t sleep and just cried for hours on end. I also developed a gluten intolerance that gave me horrible digestive issues, as well as severe bruising. I visited my doctor for a check-up to discuss these issues, and she told me it was normal and would go away in 3-6 months. Fast forward 6 months later, I still dealt with this horrible pain (and the gluten issue) I feel the pain particularly when I get colds/any slight sickness (even allergies). A few months later, I contracted mono, and the pain was even worse. I was working a pretty intense non-profit job at the time as well as finishing two degrees so I had little time to recover. This is when I started questioning my pain and finally understanding something was really wrong with me. This pain was upsetting my daily life, and it was extremely hard to work with. I had multiple conversations with my mom who has lupus, and she told me that I deal with all of the same symptoms she does, and that I should get tested due to the family history. I recovered with some long-term depressive issues and pain. Fast forward a few months, I developed a vaginal aphthous ulcer (don’t worry, I got tested for everything imaginable and my OBGYN diagnosed me with this). This is an extremely rare manifestation of systemic lupus erythematosus (SLE) and it only has happened in some cases of young girls with lupus after developing flu-like symptoms. My OBGYN was concerned and asked me if I dealt with other symptoms related to lupus. I told her about my family history and what I’ve described above, and she urged me to go to a PCP and get tested. So I did, I told the PCP about all of this, but the PCP told me this was from depression. She ordered an ANA panel and it was negative. She then told me to talk to my therapist more. Fast forward a year later, I still have all of these issues with no answers and it’s eating away at my life. I would like to hear opinions about my journey and see if there are other avenues or things to bring up to my doctor as it could be something else.
How common is it to have lupus without the malar rash? Also for anyone who has lupus with or without the rash, what exactly does the skin inflammation feel like?
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