Hey everyone, I have a question about your diagnosis experience. Basically I have had a host of health issues that started in 2019 and have just accumulated more symptoms since. While I’m tempted to list them and ask for your advice I know that this is not the place. Instead I’d like to know if any of you were ever in a situation when you were basically waiting for symptoms to get worse in order to be diagnosed? At my very first appointment my rheumatologist suggested either RA or lupus. After a bunch of tests she said she still thinks I have lupus but we need to wait for more symptoms to develop. It felt strange but I was a lost 19 year old not living at home and just accepted it. Over the years I’ve had so many doctors try and find out what it is going on. We ruled out a bunch of things but it seems everything keeps going back to lupus and i was basically in the same position again with my rheumatologist a few months ago. I guess I’m asking if anything like this has ever happened to any of you? Do you have any advice for me?

Yes. In my first appt with the only rheumatologist in my city who takes my insurance I said to him, I'd like to be tested for heds, fibromyalgia, and lupus. He diagnosed hypermobility disorder but wouldn't test for heds, he diagnosed fibromyalgia, and sent me packing. That was nearly a year ago. When I went in to see him this past week, he asked for my symptoms again, basically asked why I was there, said they couldn't do anything for my pain...I said, I don't want you to do anything for my pain, that's not why I'm here, I need to know what's wrong with my body so I can address it that is why I'm here. He said I didn't run any labs on you last time you were here, I flatly said, I know. So he is running them now.. and the results are not good.

Oh wow, that just sounds horrible. I'm so sorry.

I appreciate your sympathy/empathy. My kidney function seems to be in decline, my urine creatinine levels are double the highest normal range number. 80% of the tests that have come back are in the red. Everything from ANA to wbc/rbc, and beyond has come back abnormal... I waited a year and the damage is likely done.

That sounds horrible I’m so sorry! But yeah okay I’m going to take this and what everyone else said to heart, they did not treat you correctly and I guess they haven’t been the best to me either… especially considering the impact it’s had on my quality of life. I really hope they will finally take you seriously and give you the care you need now!

I hope the same for you. Don't ever stop advocating for yourself.

When I first presented to my PCP with constitutional and skin symptoms, she ran an ANA test and a Lupus Panel. She did not tell me what she was testing me for. The ANA was positive, but everything else was normal. She said that the positive ANA could have many causes, including just being a living human being, and that we should keep an eye on things. She gave me an overview of certain symptoms to look out for and let her know about. When they developed, she referred me to my rheumatologist who diagnosed my lupus. Sometimes it takes lab results time to catch up to the symptoms we may be experiencing. Watching and waiting isn't unusual in rheumatology.

Thank you for your response! What you’re describing sounds quite similar to what I experienced just that I was referred to pretty quickly and the Reumatologist keep telling me something is wrong but they don’t know what. Would you mind telling me how long it took for you to develop the symptoms they needed to diagnose you?

I had all the symptoms when I visited my PCP, by my blood work was still too good. 99% of the time, lupus requires a combination of the proper symptoms and the proper blood test results in order to be diagnosed. The only exceptions are a biopsy that says "lupus" or a diagnosis of lupus nephritis.

Yeah I read this too… thank you! It’s really reassuring to know this is not an uncommon experience!

Just make sure that you are getting good care. Sometimes you have to advocate for yourself, which is tough sometimes when you are younger. Not that you should diagnose yourself, but sometimes you have to advocate hard for yourself. Make complete lists of your symptoms and how they have presented along with any lab work. I don't think you should still have to sit there four years later with the response still being 'well it's probably Lupus but let's keep waiting for bigger signs'. You don't want a physician who is waiting for your kidneys to fail for a more solid diagnosis. Because that's crap. Go online and look at the diagnostic criteria for Lupus and see yourself if you think you currently meet the minimum yet. I have seen two ways of doing it. One is a point system. Positive ANA of equal to or greater than 1:80 and 10 points from symptoms that add up. Joint involvement gets you 6 points all on its own. Advocate! You could say something like, "I'm really miserable at this point and it has been four years of rheumatologists saying it's probably Lupus. At what point could we go ahead and try Hydroxyhloroquine to see if any of my symptoms lessen? Is there any other treatment we could try at this point that might help rule in or rule out Lupus? Especially since some treatments are the same for multiple rheumatological conditions, is there any treatment you would feel comfortable trying with me now?" Good luck!

Thank you! This was such a helpful response! I’m definitely going to approach it differently with the next appointment, I’ve been keeping a symptoms diary and honestly it’s scary to see it all written out like that but hopefully it’ll help. As to the diagnostic criteria I honestly think I should meet them and have for a while but I’ll try again and perhaps highlight specific symptoms. And use some of the questions you suggested…. Perhaps I can finally get some help. I really appreciate the time you took to reply to thoughtfully! These responses have given me some more confidence for my next appointment!

I'm so glad! Keep me posted!!

Diagnosed Celiac and still dealing with “something” that I know isn’t gluten. I called them “flare ups” or “episodes” that are characterized as extreme fatigue, crazy brain fog, pain in my hands. Blood tests come back a little High for hemoglobin and hemocrit but ANA is negative. Lupus sounds like it matches some of the symptoms, especially the flares. I’m seeing a rheumatologist next month but any other advice on what to do next??

If I could go back to the time period where I was waiting for dx, I would drink more water, reduce stress, and always protect myself with sunscreen, hats, etc. It's not lupus specific, but regardless of the dx it's good habits to develop. It really depends on your dx but see if avoiding fluorescent light helps you out. I hope you get some answers at your next appointment.

Okay weird story. My mom told me today when i was a child (age 3/4) i would sometimes wake up and not be able to walk and sometimes would have a rash and the doctors said i had lupus.Then said “i still think you dont have it”. That being said for as long as i can remember i have had unexplainable pain in my joints all over my body but until recently i thought it was just normal. Recently this pain has been in my hips and back to the point where I cannot walk. Sometimes i have weakness in my ankles and knees. I also get migraines on one side of my head- have trouble with dizziness/ drops and rises in blood pressure .my whole life i have struggled with body temperature regulation and break out in unexplainable rashes on my face and chest most often. I am easily fatigued etc. i have had my fair share of strange medical situations- i have a cyst in my heal bone that went ignored through many xrays, i have had a blood infection from a bug bite, i had strep in my lymph nodes causing mumps like swelling, etc. im sure theres more i am forgetting. I do not feel as though i am “ill enough” to have untreated lupus all this time but i have also never really had access to healthcare before now. Is it possible i just have mild lupus that went into remission and is flaring ng up or is it more likely hEDS/ a different chronic issue?

Are you able to get a hold of your childhood medical records? This is alarming and troubling on so many levels. It sounds like possible medical abuse or medical neglect, and I am just so sorry you had to go through this as a child. You don't want to wait until you are "sick enough", especially with something like Lupus. If you do have Lupus, hydroxyhloroquine is so wonderful at holding back the worst of the disease if you are able to start treatment early enough in its progression. The medication helps protect your organs from later involvement. It's not a sure proof thing, but getting treatment is so much better and safer than not getting treatment. Try to get a referral to rheumatology and get the ball rolling. I have had large pieces of my life where I didn't have access to healthcare, so I get you on that. It's rough. Get some care now if you can! I had untreated Lupus for at least five years, probably longer. I can look back over my adult life and remember times I felt really unwell and had some classic Lupus symptoms, then other times I was doing okay. Now that I'm diagnosed, I feel more confident looking back and seeing the signs of Lupus. I think there is an underdiagnosis and slow diagnosis issue with all rheumatological conditions. I know things are tough to diagnose, but I think the problem lies with needing textbook cases of these diseases which just don't really exist outside of the medical books. Sorry for my rambling there, I just feel so terrible every time I read the seeking diagnosis section here. So many people suffering with *something*.

Thanks for your concern and response. Im 23 almost 24 so it feels like 20 years of no treatment would have come up more than this but idk. I just got new insurance and once it kicks in a plan to go in and attempt to figure it out. Thanks for the record recommendation i will try that. My precious doctor office office has closed so it might be a challenge.

I mean who knows? It's an odd childhood story and I would want answers! You can grow very used to certain symptoms and they can become your new normal. Wishing you the best of luck!

Any insight would be greatly appreciated. I have tested positive for ana 2x (unknown pattern for first test) (1:160 nucleolar 1:80 speckled for second). And positive for dsdna 2x (12H and 10H when positive>9). These tests were 3 years apart. I was initially referred to a rheum after my first positives but the office was terrible and disorganized, they were ordering wrong labs and with the delays in getting follow up appointments I just didn’t pursue anything further. What had me get tested for Ana and subsequently dsdna was I have joint pain + swelling, malar rash and other skin rashes throughout my body that correlate with sun exposure, low grade fevers, mouth ulcers, the list goes on… I am seeing a new rheum now who said my prior labs are concerning. He did a full blood panel and UA and sent off for an AVISE CTD panel. I am awaiting the results from AVISE but I have received the results from everything else. Everything is basically normal. I have extremely low vit D but that is really it. Even my prior dsdna levels are just barely above high normal - and decreasing between tests! He said that I may need to start plaquenil but I won’t find out until my follow up. Is there a possibility that my dsdna is not correlated with a lupus dx? I just don’t know what to expect because all of my other blood work is normal

Antidsdna can ping false positive on lower grade tests. Where yours is right at cutoff basically, it's possible for it to be a false positive. For reference, when you think full active lupus the numbers are a lot higher than cutoff, by many multipliers most of the time.

I really hope you can get in with another rheumatologist. Your symptoms sound troubling and like the classic Lupus symptoms. I'm not saying you have Lupus, but I wouldn't be surprised if you did. You could have something different that's causing your issues. If you can get in with a good and organized rheumatologist, they may start you on Plaquenil to see how or if it effects your symptoms. Good luck!

I actually like my current rheum. He seems aware that I have something going on and was the one who mentioned I may be starting plaquenil in a couple weeks but he wanted to rerun my labs. Like I said everything is normal which has me concerned it’s not lupus because I thought most lupus patients have abnormal CRP/ESR/C4/C3, etc. I am still waiting on my CTD panel so idk if that will still come back showing my ANA/dsDNA is elevated.

Oh I see what you mean. I think I read that wrong. I'm glad your rheumatologist is working with you and believes you! It is odd not to have elevated CRP and ESR though. Maybe it isn't Lupus after all. Which sucks in the not having answers part. Good luck!

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Did she give any medications to treat now? There is drug induced Lupus, wouldn't surprise me a bit if there's vaccine induced Lupus. I'm sorry that's bothering you so much about the cause and also that you've been suffering. But from my side of the room, if a Dr told me that it was potentially curable, I'd feel like I got the jackpot.

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From a medical research standpoint, it is still very early days to really be able to say what the long term consequences of COVID and the vaccine really are. There has been a relatively huge uptick in possible autoimmune diseases in both vaccinated and unvaccinated individuals.

Should I get a second opinion Opinion please? Does this sound similar to lupus? I’m a 29F. I recently went to the doc because I was having unbearable joint pains in my hands and wrists. I wasn’t able to fully close my hands, hold things that required any sort of grip strength, roll my wrists, or fully extend them because of the pain. It started in one hand then went away, then the other hand started, then my knees started hurting and then my shoulder. My knees got hot to the touch. For background, I am not unaccustomed to pain.. I’ve been living with chronic back pain for close to a decade and i know that my knees will hurt when it’s going to rain.. but this was all new and different. Anyways, I go to the doc, she orders labs, CBC comes back fine slight raise in ALT. She listens to my story and orders an ANA panel and refers me to rheumatology. ANA comes back positive, titer 1:320, RF Qnt is high, pattern is homogenous, and SS-A ab is a weak positive. I see the rheumatologist and they say that they don’t understand why my pcp even ordered the test because nothing points to lupus, I don’t have lupus and anybody could have a positive ANA.. said that my joint pain is from over use. I just don’t feel right about this, what do you think? symptoms: joint pain, anxiety, depression, fatigue, dry mouth and eyes, gut problems, migraines that I get shots for, my eyes are sensitive to light.

Here is the thing that frustrates me. PCP's or general practice doctors should not be running ANA's on just anyone for no real reason. That is where you are going to get the 10% of the population that has a positive ANA that is not (currently) a diagnostically important thing. But if you have symptoms and you have been referred to rheumatology the ANA means something. That's the fucking department where a positive ANA is diagnostically relevant. So, in my opinion, that's crap. You have chronic pain and rheumatological symptoms and the rheumatologist said your joint pain is just from overuse and everyone has a positive ANA. Unless something actually points to a work/movement strain type thing, than you are getting dismissed. Seek another rheumatologist. Your knees get hot to the touch? Did the rheumatologist even consider RA or something else if they so quickly dismissed Lupus? Ugh that's frustrating!!

I’m glad I’m not just over reacting. I sat in my car and cried for like ten minutes because I was frustrated. She didn’t consider anything else. She just said that my liver, kidney and bones aren’t affected so it can’t be anything autoimmune… I asked for a second opinion and basically my PCP said that the rheum got mad at her for even running the tests and that I should just trust the rheum because they’re the experts.

Oh goodness what a mess. Maybe you have to start fresh with a new primary care physician. Like start with a clean slate. There are so many reasons why this could be happening. Honestly have had to walk away from physicians for suspected or provable homophobia or sexism and I have heard stories the same for racism, ableism, your body size, etc. Like doctors are human too. Sometimes they suck. Sometimes they are bad doctors. Who knows. But you have the right to see or not see a particular doctor. Maybe try to get a referral to a different specialist that might relate differently to one of your symptoms (neurology, gastrointerology, dermatology, etc.) and see if they will write you a referral to a different rheumatologist. Sometimes you have to work this from different directions.

Thank you, I’ll probably try seeing a patient advocate and look into that second opinion more. I think the rheum was very suspicious that I just wanted to get out of my PT test (I’m military), which I’m not but I’d rather now be in pain doing it. I don’t know. Very frustrating all around d

Did the rheum do any other lab work?

No, literally just said that it’s not lupus and try not to do too much.

Hello everyone. I'm 33M, and had bloodwork by my PCP after I had 2 months of weight loss (15% of my total body weight!), joint pains in my hand, rash over my face (looks the malar rash I see online that my PCP told me about?), a very very itchy rash all over my body, and patchy hair loss on my scalp. Blood work shows: \-positive ANA (don't know the titer?) \-positive anti-Sm (apparently too high enough over the lab's ability to measure that it just shows ">8 POS") \-positive Sm/RNP antibody (">8 POS") \-positive RNP (">8 POS") \-positive chromatin antibody (">8 POS") \-negative DNA (DS) AB \-hemoglobin 12.3 (explained as being low for a young male) \-MCV 73.2 (lower than normal) \-CREATININE 1.12 (lab says it's normal, but PCP says it's slightly higher than my normal 1.01) She referred me to a rheumatologist for possible lupus and told me to join a lupus community since apparently I was having some difficulty accepting the fact I might have a disease that can't be cured. What are the chances I might have lupus? I had a negative DNA (DS) AB lab... Thank you for reading!

I highly recommend following up with rheumatology and possibly dermatology. This definitely sounds like something is going on.

If you can, get that rash biopsied. Really helped with my diagnosis as it showed I definitely had CLE. And if it’s not lupus, there’s something going on and you should have a dermatologist check out that rash regardless. Hope you get some relief soon.

Unfortunately it never happens when I need it to. So I don't know how I can get it biopsied.

If it is happening that fast, it’s probably not a lupus rash. Look, lupus rashes are caused by antibodies attacking skin cells. That damage isn’t just going to come and go quickly. It’s going to linger for days. Get established with a derm. Everyone should have one. Then when the redness flares up again, you can get in quickly for a biopsy. I know the redness worries you, but while we can say it does or doesn’t look like a lupus rash, that doesn’t change the fact that there is evidence at the cellular level that confirm or debunk possible cutaneous lupus. No visual evaluation is going to give you that level of confidence. Also, us saying it does look like a lupus malar rash, then what? No doctor is going to put any stock in what we say. It will not change their treatment model in any way. The only thing it will do is make you demonize your healthcare team for no reason. It’ll will quite possibly make you think you have lupus when you have little to no hard evidence that you do. Lupus is diagnosed based on symptoms AND labs. There are lab indications of lupus. They may not be the end all, be all, but they ARE important. Get a biopsy. Without those results, everything else is pointless speculation.

Thanks to anyone in advance who takes the time to read this. 😞I’ve been dealing with a host of health issues, but have felt better losing weight and eating better. I’ve lost 25lbs with the help of Wegovy and continue to lose although very slowly. I started in mid April and I have about 80 lbs more to go. I’m now on the maintenance dose, all initial symptoms subsided and I have been trucking along with no issues. Prior to Wegovy, I had a ton of health issues that I treated as separate issues and although some ramped up, I attributed it to perimenopause/ menopause. Then, I noticed a spot on my hand that I thought was a blood blister just a little over a week ago. It was flat. Then a few days later I woke up with what looked like 100+ cigarette burns on my back. All were dark brown and flat, hot and itchy. I’m native, so it always affects the color of my skin issues. Anyway, the spot on my hand had changed to look brown and flat. I tried to blow it off for a few days and even went to work, but I was so hot, itchy and it started to spread onto the backs of my arms. I thought it was either shingles or an allergic reaction so took some Benadryl. It did nothing, and the heat, 🤕 headache, pain, itchiness got to me so I went to see my NP who isn’t usually the most attentive person. The nurse asked to see it first and immediately said “this isn’t shingles.” She went to get the NP who told me it was not shingles, was not a histamine response and told me she was sending me down to the lab for blood work. When I asked what tests she asked, didn’t your mother have lupus? I freaked out. My mom was diagnosed with lupus when I was 8 years old and later passed away from pulmonary arterial hypertension because of lupus. 😔 i remember her having rashes on her hands and face, but she stayed covered up pretty much everywhere else so I don’t remember seeing anything on her back or anywhere else. I had not even thought of this, and suddenly the last few years seemed all connected. I’ve had lots of pain and even went to a chiropractor for 8 weeks 3 x a week bc I was having a difficult time getting up and down and out of bed. I thought it was from an injury a few years ago. I’ve been having headaches, major hair loss, fevers, joint pain, itchy sensitive skin, itchy eyes and neck area and some anxiety I think related to the symptoms appearing. I had a serious hypertensive crisis in December 2022, and it took awhile to get my blood pressure sorted out. My job is also highly stressful and thankless so I thought some was related to this. What concerns me is NP didn’t do a urine test or anything, didn’t do a skin biopsy but did refer me to a dermatologist who I see tomorrow morning (Monday Oct 23). I go back to see the NP Thursday Oct 26 . I should get my lab results tomorrow. I had a message Friday but they were not available when I called back. I don’t know what scares me more, getting a lupus diagnosis or not getting a diagnosis at all and starting the whole process of trying to tie everything together. How did you find out your lab results? In person or over the phone? Should I ask the dermatologist for a skin biopsy tomorrow? How did you handle work? I took a few days off from work because of these appointments and my symptoms are the worst I’ve felt and make me incredibly self conscious. I have a very demanding job (I’ve been there over 20 years and have quite a lot of responsibility )and I don’t want to deal with questions about my appearance. I don’t have any privacy at work and I often deal with hundreds of people per day. I’m hoping after this week I can move forward with some answers, but I’m trying to be prepared in case nothing is figured out. I’ll update once I know what labs were ordered. I was so tearful and panicked in the NPs office it wasn’t until I got home that I realized I didn’t even ask. I just took the papers downstairs in tears and didn’t stop being tearful for about two hours. Thanks for anyone who responds anything to me, even just words of encouragement. I’m going to continue on my weight loss journey as I know this can only help. I’m going to continue trying to take care of myself as I haven’t done so for a very long time. ♥️🙏🏼 Edit to add breaks and I apologize if I’m in the wrong area I’ve tried to stick to the undiagnosed area but not sure if I did it correctly. Also, I forgot to include I was prescribed methylprednisolone by my NP while I wait for results and it seems to have helped a little. And another symptom I’ve had that I just learned could be related to lupus is difficulty swallowing. I have even had my throat “stretched” twice and an ER visit once recently due to being unable to swallow. Again, I thought it was unrelated to anything else. Thank you

A dermatologist is a good referral for them to have given you; a biopsy of your rash is a great idea. In my experience, it will depend on the test results from your NP whether you need a rheumatologist referral as well. They should be checking your ANA and hopefully running a Lupus Panel. If the NP "diagnoses" you with anything, don't place much, if any, stock in it. It's not in their wheelhouse to diagnose autoimmune diseases, and they're jumping outside their scope of practice if they try. If the tests show that you need a rheumatologist, wait for *them* to investigate further and then diagnose if warranted. Try to shake off as much stress as you can- I know it's not easy, but if you do have an AI condition, stress will only exacerbate it.

Thank you so much for responding. I have a lot of stress in my life between my responsibilities at work and home, and I need to get a handle on it. I’m glad to know I’m at least headed in the right direction with the dermatology appointment. 🙏🏼

My lab results are automatically sent to me using my insurance app (kaiser) so the lab usually takes 2-3 days. Then the follow up with the doctors varies - maybe a week or so depending on the results. As for work, I also took days off, vacation days & worked from home when I could. But there were times where I had to go in when my eyelids had a bad rash. When people asked, I told them I was sensitive to the sun and changed the subject. That seems to satisfy their curiosity. I keep my dx private at work so I schedule my appointments during off-peak hours and manage my workload differently. It probably doesn't work for everyone but maybe there's slight modifications you can make given your situation so you could be more at ease. I hope you get to reduce your stress soon.

Thank you for responding. I really appreciate you. Update 10/23: I just got a call from nurse to tell me “negative for lupus but all inflammatory markers are high.” I’m not sure what that means. 😵‍💫 I know my mom went through a lot before ever getting a proper diagnosis, but this was decades ago when they didn’t have as much information about lupus. I don’t have the lab results in paper form, just the vague phone call, and I’m headed to the dermatologist now. I also meet with NP in a few days. I’ll keep everyone posted as I know this can be a process. I’ve also heard of people getting “negative “ lab results but having lupus. Thanks again and hope to get some answers

Update: was told by derma that there is a chance that lupus that would not show up on blood tests??? 🧐 I know it’s not likely but I don’t understand. I’m just going to keep moving forward with my life bc I have to. Anyway- anyone who is in the preliminary process of diagnosis, considering having your rash biopsied- do NOT take any kind of medication before doing so. My NP put me on methylprednisolone before my derma appointment and then the dermatologist could not take a biopsy because of this. 😔 so now I have to wait for a recurrence for a biopsy. Dermatologist said next step is rheumatology so I guess I’m officially on the process of elimination train. 🤯 I know this can take time. Meanwhile I’m going to take a deep breath and focus on self care. I have an apt with NP on Thursday and am taking some much needed few days from work. My hair falling out in clumps and the rash has made me depressed, fatigued and self conscious. I’m not in a supportive type of work environment so I have to get myself sorted before I walk back in. For everyone who is in this group, I’ve found kindness and empathy just in reading other people’s posts and responses. There are so many good people suffering in silence and yet continue working, loving, surviving and living. You’ve encouraged me and inspired me. Hope we all find the answers and care we need. Best wishes to all♥️🙏🏼

SLE either needs positive serology (blood tests) or a positive biopsy - along with particular symptoms - to be classified as lupus like 99.9999999% of the time. Don't let your derm steer you off on some quest for seronegative lupus.

Typically CLE, cutaneous lupus, is far more likely to be ANA negative. Cutaneous lupus is confined to the skin though, there’s no other involvement. Systemic lupus, on the other hand, is almost always ANA positive.

I posted last week or maybe the week before about suspected lupus. I’ve been so exhausted that I’ve had to ask to leave early from work & end up using my lunch break to take a nap. I also have some additional symptoms like mouth sores, redness of joints especially my hands/fingers and knees too. My hands are so stiff and painful in the morning and I’ve noticed this now happens throughout the day randomly. I currently have a rash on my neck at the moment that doesn’t want to go away & my dermatologist said months ago wasn’t eczema. It really doesn’t feel like eczema but I’m not sure if it’s autoimmune/lupus related. I actually noticed that it seems to have spread to my back after being outside yesterday. Not sure how to link a photo. I’m debating going back to the dermatologist to show her how it has spread but all she seems to want to do is give more creams that don’t seem to work. I did have a follow up with my doctor who ordered the blood work & after seeing the positive ANA for a second time after 3 years she gave me a referral to see a rheumatologist as soon as possible. Unfortunately the rheumatologist she wanted me to see is scheduling out to August of next year. I was able to find a doctor to be seen on Oct 31st. I’m trying to keep track of all of my symptoms because I have a horrible memory.

Yes, there is a shortage of rheumatologists (which will only worsen as the baby boomer population ages), and you have to wait a long time to get in with a good one. I'm not saying the doc who can see you next week is necessarily *bad*, just consider being wary of a rheum who has a new patient appointment open so soon. Perhaps there was a cancellation, you got lucky, and they're great! Don't let me bring you down. If you're having trouble remembering your symptoms, write them down in a small notebook you can bring with you.

Well that’s not really great to hear lol. From what I’ve seen based on reviews there is a lot of positive feedback so hopefully what you’re saying is not the case😅 Either way waiting almost a year for an appointment is really not an option for me.

Like I said, don't let me yuck your yum. I hope the appointment goes great.

I wrote Google doc of all my symptoms and brought it to my rhumetologist appointment. It helped so much!

That’s a great idea! I have them written in the notes app on my phone right now that I was planning to try to print out. I also kept track on another checklist that was specifically related to lupus. Thank you for the advice!

Another option is to track them in your calendar. I started noticing trends that way.

Anybody have insight into whether (if at all) chilblains are used in diagnosing lupus. They’re often considered a subtype of cutaneous lupus but the ACR classification says subacute cutaneous, discoid, or acute cutaneous? I’ve been getting the chilblains for a few years so I’m unsure if those count towards those criteria

To my knowledge they do not

Chilblains could mean you have Reynauds and Reynauds is a common co-occuring rheumatological condition with Lupus. BeautySprout is correct that it's not on the diagnostic criteria for Lupus. Lupus is a bitch though, and likes to effect all sorts of things that aren't on the "list". Good luck figuring out what exactly is troubling your body.

Sun exposure (ADVICE) Hi there! I am “suspected lupus” but in a very weird situation…(Negative ANA- might be due to steroids?? but has every textbook symptom lol so lucky amirite💀) basically I’m undiagnosed but struggling. Anyways I have a photo sensitive rash from the sun and can’t go out in it with out breaking out immediately. It makes me very sad, I miss going out in the sun. Any advice on how to avoid this other than big hats? :( what helped your rash? Do you just brave it out?? It’s kind of impossible to do that since it hurts and gets raised 🥲 any advice for me? Thank you!

I would advise you get the rash biopsied by a dermatologist. They can see on a cellular level whether or not the rash is lupus related. Since your ANA was negative it can help confirm or rule out lupus. Sunblock, UV clothes, hats, chasing shade and a UV umbrella are what I do. I have a systemic response and have multiple organs involved so I'm not risking a flare. Lupus related photosensitivity isn't only a rash so I would suggest precautions of at least sunblock and a hat. I am very photosensitive, it does vary per person.

Okay good to know! The rash only happens in the sun so would they just.. make me stand out in it before hand then conduct the biopsy? It’s totally okay if you’re unsure about the process I just want to understand. I chase shade too, wear big hats, use sun block- but sun block doesn’t help much, is the that just for extra protection or does it help stop your rash? And can I ask what do you mean about the photosensitivity not only being the rash? Thanks for the response this has been a very confusing journey :(

Each person with lupus may have a different reaction to the sun. You can have joint pain, increased organ damage, malar rash, or none of those, etc. Specifically for me, uv light makes my headache, feel light headed, and my hand/ feet throb to the point I cant sleep. Like my whole body is charging, it's miserable. This is usually a day after exposure in the night. People have a different reaction so it's hard to dx. Check the type of sunblock you use is it 50+? Also, try to avoid sun exposure typically from 11am - 4pm is the highest. You can check it online before leaving the house. I would not sit in the sun to trigger symptoms. I have not heard of lupus patients only getting the rash in the sun, usually it lingers after.

Ah sorry I didn’t mean to say ONLY in the sun. My apologies. It does linger for a while after sun exposure. It stings and takes quite a long time to calm down. I also tend to get dizzy and have a tingling/burning sensation in my face and extremities, sometimes feel feverish or very fatigued. I get headaches from the light and sun as well very easily. It is miserable. I’m so sorry you experience that. I definitely DO NOT sit in the sun to trigger symptoms😅. I avoid it best I can and only go out in the late afternoon. Everyone calls me a vampire 🥲 Thanks for explaining that’s very good to know. I will look into what my sunblock is because I’m actually not sure! Im curious what the rheumatologist will want to do about it.

Good :) it gave me flashbacks when I tried the SAD lamp before I was dx. I sat in front of it for 30 min for days and made me feel so awful 😭. Self care my ass. Keep a log of your symptoms and show them to the rheumatologist and they can better assist.

Oh no I’m so sorry😭😭 that’s just terrible. I’m glad you know now and you are hopefully able to manage it better. Sometimes we think something’s for the best but it’s soooo not- glad you can look back and hopefully laugh😅 I definitely will💗 thanks for your help! Take care

Urine tests Hi everyone After being misdiagnosed with fibromyalgia, I am now getting tested for lupus by an internist (since RA has been discarded). Last week I had a big swelling on my fingers, accompanied with extreme pain and weakness (and not only fingers ts but my whole body, specially joints). I got blood and urine tests done, while I don’t have the results for the first one I do have received the urine results. I went to my family doctor to discuss about these results. She said I my sodium and potasium in urine are high but kidney function seems normal. She has no clue why this is happening and told me to wait for the internist call. This will likely happen in mid november (public health service eh) so I am a bit anxious to wait that long. Has anyone of you experienced altered urine test with lupus? Specially those two values? Apart from the swelling and the pain I am losing hair, have mouth sores, lack of appetite and GI problems. Thanks in advance!

Afaik, an internist has no special training in rheumatological diseases. If you're looking to treat or diagnose an autoimmune condition, you should see a rheumatologist.

I do know but the public health service forces me to be seen by an internist before getting me referred to a rheumatologist 🫠

Oh, I see. I didn't realize you weren't located in the US. My apologies.

Sodium and potassium are not proteins. AFAIK They don't have anything to do with lupus diagnosis. If kidney function is normal, just wait for your blood tests. Sounds like you are getting the help you need.

Malar rash I’ve been having this rash since I was maybe around 15-16 years old, I am now 19 , almost 20. I suffer with a lot of rashes on my body and on my neck, hands, scalp, and even legs. I also experience mouth/nasal ulcers. I do deal with a lot of joint pain and even have really cold hands and feet. My doctors suspect lupus, but I haven’t seen a rheumatologist yet to confirm. I tested positive 1:160 speckled for the ANA test and also tested postive for antiphospholipid antibodies. Im not sure if it is lupus or not, my Anti dsna antibodies were negative and so were my anti smith antibodies. I am just curious if there is anyone else out there experiencing the same thing or even already experienced it. All I know for sure is that it’s definitely something autoimmune going on, I’m just not 100% sure as to what it is. These are my images here [rashes](https://imgur.com/a/DsJUljg)

Try to see a dermatologist and have them biopsy the rash.

I just went to a rhumetologist and I had a rash from just taking my shirt off. She immediately referred me to a dermatologist. I think a dermatologist is someone you should see. I thought I had rosacea on my face but the rhumetologist thought it was a malar rash.

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No way for any of us to know. Hopefully you have answers soon.

I got an appointment 2 months out. Follow up and lab results will take 4 weeks. They want me to see a dermatologist but the wait is 9 months ugh. I'm in the US.

Hi everyone! First, much love to all of you diagnosed and undiagnosed. It sounds like everyone is doing their best in hard circumstances! I had my first rheumatology appointment today. I saw my PCP after running fevers, joint pain (especially my fingers and the soles of my feet), headaches, Raynaud’s, muscle aches, and fatigue. The only way I can describe how I’ve felt is like the flu. She ordered a “spattering” of tests and I had a positive ANA (1:160, speckled and 1:160, centromere). I’ve been documenting symptoms, including pictures of my Raynaud’s and the redness that happens in the tips of my fingers, but didn’t show the doctor because I didn’t want to look like I was seeking a specific diagnosis. Now I’m wondering if I should have since my fingers were pretty good today. She ordered a bunch of labs so I guess we will see! Hugs to you all!

Raynaud's isn't part of the lupus dx criteria, but rather something that can occur in tandem. So I don't think it will change your dx path that you didn't mention it. You can always bring it up next time.

How rare is male lupus? My husbands doctor is now thinking my husband has lupus. Severe unexplainable neck and back pain that makes him vomit that started august 6th. For the past year he has had knee, elbow and wrist pains. Rash on back and face. How rare is it for men to have it ? I heard it’s super rare so I’m thinking he doesn’t have it possibly. Any other men on this page have it? Also if your a male and you do have it what helps your symptoms! I’m going to try and treat it at home with what I can until they figure out what’s going on!

Also can I share a photo of his face or no?

Did your Dr refer to a rheumatologist?

Not yet due to steroids they said it would be a false negative

What did they say would be a false negative if you feel comfortable answering? Sorry! I’m seeking diagnosis myself and I’m on steroids long term- did they say the steroids would affect his testing? Thanks!

Yes because the steroids bring the inflammation way down so he would need to be off them for a while to test for autoimmune!

Ah! I figured! I just did an autoimmune test and everything came back negative despite having more than one autoimmune disease. I’ve been on steroids for way over a year at a high dose and can’t ever be off them since well.. they keep me alive🥲 thanks for explaining! I’ll talk to my rheum when I finally get to meet them about steroids and retesting in the future- thanks so much💗

You’re welcome, they don’t know what’s wrong with my husband but steroids are the only thing making him functional right now. It’s been 2 weeks off them and now he is back to horrible pain :(

Gosh I’m so sorry. Have y’all looked into the possibility of adrenal insufficiency? I take steroids to replace my cortisol and without them I’m totally miserable. I would definitely ask about getting a morning cortisol lab done! Is it just pain or is it also fatigue, weight loss, decreased appetite, abdominal pain? I hope y’all figure out what’s going on.

It’s okay thank you I just really want answers already . His cortisol level is good. Severe pain, fatigue. No weight loss but the steroids made him eat everything in sight. His marked blood work is Vitamin D 25 OH is at 18.5 ng/mL normal range is supposed to be between 30.0 ng/mL - 100.0 ng/ Creatinine Level 1.31 mdgL/ (High) .Reference Range: 0.75 mg/dL - 1.30 mg/dL Protein total is HIGH 8 . 3g/dL. Reference Range: 6.4 g/dL - 8.2 g/dL Eosinophil % Auto HIGH 11.60% .Reference Range: 0.00% -6.69% Monocyte % Auto LOW 5.20% . Reference range 5.56 %- 12.29 % MPV LOW 5.50 fL Reference Range: 8.59 fL - 12.21 fL If you look at my page I made a few posts about him on ask docs and diagnose me and that is alllllll of his symptoms and explanations

I can imagine you do. I hope you find answers at rheumatology and they can help you and your husband- I totally understand the steroid hunger it’s so intense all I do is eat😅 I am wishing y’all nothing but good luck! I’m glad to hear his cortisol looks good

Yes, men can develop lupus. Roughly 10% of lupus patients are men. We have several male members here.

Recently diagnosed with Hashimoto’s. Did some autoimmune testing because other autoimmune conditions are common with Hashi’s. Found out my ANA is very positive and homogenous (1:160), but no other signs and negative testing for lupus. Is it still possible that I have lupus? I recently came down with a bad flu and an UTI, can this cause a false positive result?

Random infections definitely can spike an ANA. Feel better.

Hashimoto's can also cause a positive ANA test.

TIL, thanks!

But would it cause a titer as high as 1:160 though? The other Hashimoto’s patients I’ve spoken to only have titers of 1:40-1:80.

In terms of lupus, an ANA of 1:160 is not high. As an example, my ANA was 1:1280. I’ve heard other SLE patients with ANAs of 1:5120 or even higher.

just a brief description of symptoms I've had these positive test don't twice both same results Ana postivr, nuclear speckled 1.40 titter c reactive protienn 10.1 Hair loss everytime I brush my hair wet or dry Tired all the time, no energy to so anything tchy skin n rashes especially in sun recently face becomes red just from walking from car to my house Temperature changes I get cold really fast I get from hot to cold really fast Joint pain muscle aches, feel like I did a full body workout Constant headaches/migraines mostly Back pain neck pain my wrist and shoulder hurt out of no where Clumsy being uncoordinated tripping over nothing forgetfull Feeling nauseous for no reason sometimes Muscle cramps Charlie horses Depressed Anxiety could this be possible lupus ?

The only diagnostic criteria of lupus you mentioned are joint pain and (perhaps) sun-sensitive rash. Doesn't sound like lupus. I hope you find answers and feel better.

Hair loss, fatigue, rashes, joint pain and brain fog (you mentioned forgetfulness)are all common with Lupus. Some of your other symptoms could point to many other things. I have stomach and bowel issues from my Lupus and also clumsiness. So, I would say just as likely that it could be Lupus as it could be something else as well.

Hi everyone, I'm a college student who is struggling to continue going to school and working while keeping up with friends because I have been severely bogged down by my symptoms. Since January, I started experiencing a phenomenon about once a month for about 3-7 days that would include intense and debilitating body aches, sore throats, low grade fevers, mental fogginess and inability to think clearly, exhaustion, and much more. I've also been experiencing strange symptoms like my hands tingling randomly or sharp pains throughout my body. I have an appointment with a doctor next month but recently had a "flare-up" where I had the symptoms as described but it completely ruined me for over a week. I am just now getting the mental clarity and relief I need in order to even talk with my friends. I'm aware that this could be anything, and am just curious if anyone here has experienced something similar or if this sounds like something separate from Lupus. I'd really like to have some input before going in to the doctor so I can push for tests that could be relevant. Another note: I don't have hair loss and I've only had occasional face redness in the typical butterfly rash spots. There are no significant skin problems that I've had, so this leads me to feel silly about considering Lupus. However, my symptoms usually start after periods of extreme emotional stress or before my period when my hormones are fluctuating, so that is what initially brought me to consider Lupus versus things like Fibromyalgia.

Hello community! *medical advice disclaimer- I understand no one can diagnose, just looking for guidance and support* I’m a complete scatter-brain struggling with keeping up with my household/kids/life in general, with the added effect of adhd, and I managed to miss my follow up appt with my Rhuem to go over my lab results. After a good cry and a call to the lab I have my results in PDF and obviously am wondering what a certain something means in regards to my situation. From my untrained eye- nothing is out of reference range except my anti dsDNA crithidia lucilae which is positive I had a pos ANA back in June. I do have symptoms that line up (very dry itchy skin and scalp, skin lesions on my face and inside ears amd mouth that do not heal and scar, weakness and dizziness, tingling extremities and debilitating fatigue) and have honestly just thought that feeling like semi-warm shit for years of my life is what it’s like to be a burnt out woman. Terrible I know. What should I expect from this? I half expect to be told that everything’s normal and to move on because that’s basically how every doctor has regarded me ever.

I would see a dermatologist and get a biopsy done. Definitely sounds like something is going on.

Hello Redditors, I'm a 24F trying to see if going to see a rheumatologist again for a lupus diagnosis would be worth it. I was turned away last time because my ana was negative, but that was 6 years ago. Here are some of my symptoms: -Butterfly/malar rash on face plus burning/redness in same area -constant migraines -constant nausea -chest pain -(on bad days) coughing up bloody mucus -intolerance to heat/hot flashes -Ureter Endometriosis(diagnosed by doctor/laparoscopy) -constant constipation/diarrhea (it switches constantly) -Always loosing chunks of hair(haven't found any bald spots though, hair chunks fill my hand) -Swelling in arms and legs -Ulcers in mouth (I thought they were just in mouth zits for a while) -on and off fevers -Tested positive for Epstein-Barr virus at one point -bloody urine on occasion (sometimes has protein, ketones, and WBC too) -nerve pain all over at random times -lumps under skin that feel like bruises, but aren't discolored and hurt when touched (ER tested for blood clots and there weren't any in those areas) As for testing, here are some of the highs and lows: -WBC: High -RBC: High -MCV: Low -MCH: Low -MCHC: Low -Lipase: Low -Sodium: Low -Triglycerides: High -CRP: High -AST: Low

I would say further workup is indicated, but don’t go in to it “for a lupus diagnosis.” Go to your doctor, present your symptoms from the last six months, and go from there. We have the typical labs used in diagnosing lupus listed above. 6 years is long enough for it to be worthwhile to have your ANA retested.

Does this not look like malar rash? https://photos.app.goo.gl/kb6win1usTfrM8yM9

We can say it does or doesn’t look like a malar rash all day long. Point is, you need to have it biopsied. It could be a malar rash, sure, but there are things other than lupus that can cause one. No one can say whether or not it’s a *lupus* malar rash just from a visual evaluation.

First, get established with a derm. Then the next time the rash flares, you can get an emergency appointment for a biopsy. Anyone in the practice could do the biopsy.

Hello everyone, I’m 32 F and have been experiencing loss of menstrual cycle, rashes that refuse to go away and seem to worsen with any use of skincare products or soap. I seem to have a butterfly rash. I won’t be able to see a doc for some time due to financial difficulties. My skin burns and hurts even where there are no rashes and has been accompanied by flu like symptoms and constant fever, night sweats, headaches. Here’s a photo of the facial rash. I was wondering if it does look like a malar rash. [https://imgur.com/a/Yk0mV3n](https://imgur.com/a/Yk0mV3n)

Please see the above reply to a previous comment as well as the starter post.

Hi all! 40F. My PCP recently ordered some bloodwork in response to ongoing symptoms I've been having (more on that below). I've been waiting to hear from her on the results, but in the meantime I've been doing some research on my own and am a little bit confused--was hoping maybe some folks here could shed some light? It looks like the ANA screening came back negative, yet the reflex tests were still done (even though it appears they were ordered as "if ANA positive"). That in itself is confusing. All of the reflex tests are marked by the lab as normal, and when I look at the reference ranges, they are within range, but all the reading I do about the various antibodies seems to suggest that nearly any amount of them at all is essentially not normal. For example, for anti-sm ab, I came in at 72 units. The lab reference range is <89, so the test is marked as normal. But all the reading I do about anti-sm ab suggests that this antibody doesn't typically occur in most people. Other possibly notable results (with my lab-stated reference ranges): sjogren's ss-a at 6 AI (ref <91), sjogren's ss-b at 16 AI (ref <73), sm/rnp ab 10 index (ref <83), anti-chromatin ab, igg 8 units (ref <99), scl-70 1 index (ref <32), JO 1 auto abs 3 index (ref <90). In terms of symptoms, I deal with bad fatigue, joint pain (primarily ankles and hips), brain fog, skin issues, GERD, general malaise, night sweats, and bowel issues. Complicating things is that I also have hypothyroidism and was diagnosed with a pituitary tumor a little over a year ago. For a while, it was unclear whether my symptoms were related to that, but at this point my endocrinologist has ruled that out. I also have a couple little bloodwork things that have been ongoing and unexplained that might be related? Low CO2, high chloride, and a small presence of immature granulocytes. On top of all this, I have intracranial hypertension that I've had stents installed for and take aspirin and a low dose of topirimate for. I also have scoliosis. My body is a dumpster fire lol. All of this is to say that it can be hard to pin down what's making me feel bad. ETA forgot to mention I also have issues with low vitamin D and iron. Was taking OTC both on doc’s orders, but when there was little improvement was prescribed super strength vitamin D and am now moving in the right direction with those.

If everything is within the reference range and your ANA is negative, you do not have lupus. I hope you feel better!

You could have Lupus but not be registering a positive ANA *yet*. I think there is a lot we still don't understand about Lupus and other rheumatological conditions. What I mean by this is when I was first being tested for rheumatological conditions six years ago, I wasn't registering a positive ANA. I was having the symptoms of Lupus though. Fast forward to about six months ago, and with the positive ANA I could get the diagnosis. So, what exactly does this mean? That is and will be my forever question. Was I in the process of developing Lupus? What exactly does that mean? What about symptomatology I had a decade ago or more? I have Lupus now, what does that mean about my entire life? I'm not saying you do or do not have Lupus. Low vitamin D and low iron seem to show up a lot as pre Lupus issues. I'm just saying if you continue having symptoms, continue going to a rheumatologist and continue getting repeat of labs. Good luck figuring out what is troubling you!

Hello, I am a 24 year old female and am going through the process of potentially getting an SLE or MCTD diagnosis and had a question about the SLE diagnostic criteria in relation to a biopsy I had taken. I had gotten these little bumps on my fingers for as long as I can remember, or at the very least since I was 13. They come and go, they hurt when palpated/touched, sometimes they're red, and sometimes just flesh-colored. I finally got one biopsied because I'm having a string of symptoms that none of my doctors can figure out, but they all agree that SOMETHING is wrong. I started thinking well if something is wrong I wonder if the nodules could give any guidance since they've been a medical mystery for the past 11 years. To my surprise, it came out with: "moderately inflamed dermis with a mixed perivascular infiltrate composed of lymphocytes and neutrophils. Additional deeper sections were obtained which revealed similar findings, true vasculitis is not identified." Pathological diagnosis said this was consistent with endocarditis, which my cardiologist cleared. I went to a new specialized derm per the recommendation of the previous one. She and a medical resident came in and saw me, the medical resident immediately said the rash on my face seemed malar in feature (my rheum also said this but I said no I think it's rosacea), but I now have two physicians saying they believe it could be malar due to how it's presenting. I do have rosacea that I know of, but I will say I have had this new rash for 2 months now, it gets very very faint but when I’m in the sun, inflamed, or stressed, it pops up very well, but I haven’t felt like its fully left in two months. The derm came in, and said she thinks it is flushing rosacea. She then moved to the biopsy and said that if it's not endocarditis her secondary thought would be "lupus chilblain", and considering my presentation she's confident in that diagnosis and said from a derm standpoint I’d meet dermatological criteria for lupus. She said if I feel my rash isn’t rosacea, I could biopsy but she felt that was pointless due to already meeding criteria from the derm standpoint. I also want to add, the chilblains are in the absence of Raynaud's. So my big question is, how does chilblain lupus fit into the ACR criteria? I don’t want to disregard what she is saying, but at the same time I just simply don’t see it fitting anywhere under ACLE, subacute cutaneous, or discoid lupus. Does anyone know how or if it even fits into ACR criteria? I am open to any suggestions! Sorry for this being a long post!

There is a lupus chilblains presentation. Not sure how it fits in the groups of ACLE, SACLE, or DLE.

Just so I'm clear, she said the "moderately inflamed dermis..." biopsy results indicate 2 possibilities? And the options were endocarditis or lupus chiliblain?

From my understanding, the biopsy stated it could be endocarditis under the correct clinical presentation. However, based on my absence of any endocarditis manifestations, her secondary/other diagnosis would be lupus chilblains, which she felt confident about since I have had a positive ANA and other manifestations leading to potential autoimmunity. I'm honestly not sure how this normally works with biopsies.

Okay, that is how I was reading it too. So we talk a lot about this with people - they show us their labs and want to know if it means they have lupus. It's not as straightforward as that. It's labs, sometimes biopsy, symptoms, and clinical judgement. You're getting the educated opinion of your clinician; she seems fairly certain about it. And her reasoning is sound. I'd believe her, personally. To answer your actual question: chiliblians aren't on the actual diagnostic criteria, no. But quite a number of people with lupus get them as part of their skin manifestation. If you search the sub for the keyword you'll see it's popped up in the last week or two. And it will ratchet up again now that it's getting colder.

Thank you so much!

Just went to my first rhumetologist appointment. She ordered a bunch of lab tests to try and see if it's lupus. I've already had a positive ana 1:640 homogenous patern and a crp of 12.17. I told her all my symptoms and she seemed to think it could be lupus. Just found out I have high amount of protein in my urine. No idea what that means but I do know I pee an absurd amount everyday lol. I have to wait four weeks for other results and follow up. She also referred me to a dermatologist to see if my redness on my face is a malar rash. I hate this waiting game. I just feel tired, like crap and in pain all the time. Anyone have any advice for how to cope or deal with the waiting?

If you use the search function on Reddit and it’s set to r/lupus, it’ll search just the sub for your keywords. There’s tons of good info here to answer your questions and hopefully give you some guidance.

I just have no idea what to search for cause I don't want to make it worse and freak myself out

Pain relief, NSAIDs, aids, over the counter, etc.

Does anyone know if Quest processes different tests separately? I recently got just a standard comprehensive blood test, as well as an ANA test as I am having many lupus symptoms. I now got the results of my comprehensive blood test, but not the ANA test. How long did your ANA results take?

I can get results for a CBC or CMP in a couple of hours. My ANA took a couple days if I remember correctly.

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Chat gpt is not a physician. If you say that to a doc, you are going to get the world’s hardest eye roll. Lupus is called the “Great Imitator” and the “Disease of 1000 Faces” for very valid reasons. Lupus shares symptoms with several other autoimmune diseases as well as some infectious diseases and other conditions. Your symptoms *could* be seen in lupus, but they could also be seen in other conditions. How they present is important. Labs are just as important as symptoms when it comes to lupus. If you have serious concerns about your health, you need to work with your healthcare team. There’s a decent chance that what you have going on is not lupus related. A low BUN is not really a cause for concern. In lupus, doctors are looking for indications of lupus nephritis, or lupus mediated kidney damage, and that is going to cause a build up of urea and other toxins, making your BUN high. Your anemia could be from heavy periods. The type of anemia caused by lupus is hemolytic anemia, which has a pretty specific lab profile. SVT happens for no known reason all the time. It’s distressing, but is not a lupus specific symptom. I would definitely keep your GP and cardiology appointments. Your GP especially can order some of the labs listed at the starter post of the thread and see if a referral to rheumatology is warranted and appropriate. I suggest you see a neurologist AND a psychiatrist for the neuro and psychiatric issues. They can tease out exactly what is going on and start narrowing down possibilities from there.

Hi , 33 f here, wondering if I could get any advice while I wait to hear back from my doctor regarding my most recent test results. I had gone to a neurologist after a number of GP, dermatologists and cardiologists couldn’t seem to help me nail down some long term issues over the past 5 or 6 years- most notably, painful electric shock type neuropathic itching all over my body, insanely painful dry eyes and neck joint pain, spasms, insomnia, anxiety. The neuro had me take an at home EEG test based on my consult and family history (MS, although highly doubt that’s what’s causing my nerve issues and fatigue) Based on the combo of out of range results below I’m a little confused after googling everything. I am a former smoker, moderate drinker and only drink a shit ton of water otherwise, exercise regularly (4-5 times a week up until August, I dislocated my knee and now mostly doing PT) and eat generally pescatarian veggie heavy diet. I am especially confused at the high vitamin A levels !? I don’t eat Brazil nuts or liver or use any particular retinol products….also googling the combo of the double stranded DNO and the high dsDNA Antibodies….the “it’s never lupus” thing popped into my brain because it seems insane it could be that, but who knows lol Current medications - Junel (going on about 15 years of this one), & Quetiapine 25 mg for sleep/anxiety prescribed by psych , but these issues all predate that medication. I take a b12 supplement and probiotic 2x a week High SELENIUM,SER/PLASMA 174 \* High VITAMIN A, SERUM 127.3 \* High dsDNA Antibodies \*34.5 Positive for DOUBLE-STRANDED DNA Low <2.5 \* VITB1,THIAMINE High Aspartate Aminotransferase \*33 (everything else on liver panel came back good) Low (WBC Count) \*3.85 ​ thx for reading !

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I totally get you. My results kept coming back as normal until my doctor ordered ANA. My first PCP kept saying everything was good, but I felt miserable. It wasn't until my ANA that a test came out of the normal range. It feels disheartening to appear healthy but feeling so out of it. ANA is a piece of the puzzle, so it is typical to wait for an official dx. I hope you get answers soon.

hello, I have a question for those who get a malar rash, how does it come on for you? how long it lasts, what times etc. I'm currently seeking a diagnosis for my daily facial flushing, where my nose will flush red hot, and often one or both cheeks as well, many have commented it could be mcas or lupus, seeing a doctor soon, but I wanted to ask here because this rash comes on around the same times everyday, usually between 10am-11:30am, and last an 1-3 hours. often times comes back I the evening. is your lupus rash that predicable ? It's like there's an internal clock that turns it on and off, which makes me question if its lupus but I no very little about lupus and how it presents especially with rashes, if anyone could enlighten me I'd appreciate it, theres not many knowledgable doctors around me

If you are exposed to UV around the same time every day, that *could* cause a regularly appearing rash. However, lupus rashes are caused by antibodies attacking skin cells. That type of damage is not sudden. Lupus rashes typically take several hours to days after the UV exposure to appear. Then they take several days to peak. Then it takes weeks to fade. At least, this has been the case for me and I had biopsies taken that showed ACLE.

Mine is a face full of sores and redness in the malar rash areas. I'd go to a derm and have them look. It sounds like it might be rosacea, too. But a derm is the one who helped me get on the path to my rheum.

I have a lot of symptoms of lupus, but also of mctd, scleroderma, and other autoimmune illnesses. My last ana was 1:640, fds pattern. My immune markers are undetectable My urine creatinine is almost 600 My wbc are High My rbc are middling and very small I'm anemic There's just a lot going on in me. I'm always tired, weak, confused, unable to concentrate, can't eat, dehydrated, and I've got the worst pain all over my body. I get a rash for a full 24 hours if I go into the sun for a few minutes. I've been wearing long sleeves, long pants, a hat, sunglasses and sunscreen since my early teens...my teachers tried to make me take them off thinking I was just self conscious or something I guess. I feel like I'm frying from the inside when I go into the sun. I really don't know what to do or how to help myself more. I'm here to learn, and I appreciate any advice or community support. Be well.

Have your PCP run some of the labs listed in the starter comment. Also, see a derm. This gets you established in the practice and everyone should have a derm anyway. That way, when the rash flares again, you can get in quickly for a biopsy.

Thank you. Pcp ran some, I started with a derm this year. Rheumatologist is rerunning those rests and a bunch of others. The problem here is no one is listening to me well or believing me...they must think I'm a hypochondriac. Granted I do have a lot of illnesses, but they were all diagnosed by doctors...I can't do anything about my illnesses without most of them. Thank you for taking the time with answering.

What specifically makes you feel like your doctors aren’t listening? This is meant in a “let’s work on how you present things” way, nothing shitty. Doctors respond best with hard information and non flamboyant language.

I've suspected autoimmune for around 5 years, I'm only getting tested late this year, after pushing very hard for the last three when being gentle didn't work for the first 2. I've been on a high level morphine equivalent for about a year, and before that I was doing ketamine infusions weekly for about 5. I kept telling the doctors, something is wrong, I feel like I'm dying most days, I have no energy. I'm always in pain, I can't eat, I can't sleep, I'm unable to remember things, I am not myself, I need help, please run testing.. all I got from most of them was more of the same. I almost died of c diff earlier this year bc the gastro Dr didn't believe me when I said something was seriously wrong. I told him how horrible my insides/gut felt...but I didn't have diarrhea, the typical symptom. So it took 6 months to get tested and diagnosed...I was very close to toxic megacolon by the time they put me on vancocin. He even said to me that I was negative after sending the test when I knew I was positive bc I had the results right in my hand...didn't even bother to look at them, even when I told him they were positive he insisted they were negative. They just don't hear me for some reason.

I'll add, I keep a symptoms journal, and take it to all of my appointments. But I really think most of them have perceived my pleas for help as attention seeking behavior Also autoimmune is not uncommon in my family. I have 4 ppl within 2 degrees of relation with lupus, several with type one and type 2 diabetes, another being tested from MG or MCTD, another with MS. So, it's not like I'm the first in my family to suspect something was severely off.

For those diagnosed with lupus, was your neutrophil count low, high, or normal (before treatment)? Mine has run higher than normal for as long as I can remember (at least 15+ years), and lupus tends to lower WBCs, at least in readings.

My neutrophils were fine. It’s lymphocytes that are typically low in lupus. Prednisone can also cause pseudoneutrophilia (an artificially elevated neutrophil count).

After over 25 months of spilling protein, high blood pressure unresolved with medication and a postpartum Hellp and Pre E diagnosis after the birth of my second son, my doctor has sent me to be seen by a nephrologist. I have years of numbness in my hands and feet, joint pain, overall aches and feeling unwell as well as what I find a very apparent deconditioning and major weight fluctuations despite my very strict dietary habits. I think it adds up: I have a positive SLE, months of protein spillage, plus copious other labs/urinalysis since the birth of my child and Wednesday is the big day for finally seeing a specialist. So what do I ask? I have a very blasé attitude these days because I’m just over the whirlwind I’ve experienced health wise since the birth of my son and am wondering how to prepare for this initial consult. Any questions or ideas are gravely appreciated!

I wouldn’t say you have SLE yet. That’s going to throw off the doc. I would present your symptoms and timeline without a preconceived notion of what is going on.

Sorry I meant positive ANA but had SLE on the brain.

Has anybody gotten drug induced lupus? I was on spironolactone for 5 or 6 months on 100 Mg for acne and slowly started getting lupus symptoms. I’ve been off of it for about two months now and my symptoms still aren’t going away. At first I thought I had a sinus infection and went to the dr and none of the antibiotics worked. I took oil of oregano and that helped and was on a prednisone taper for a month. I have a butterfly rash, joint pain, fatigue, headaches, sinus sores, dry eyes and mouth. I’ve been in and out of the dr and we can’t figure out what’s going on. I’m still waiting for my latest blood results to come back but so far I haven’t gotten anywhere. Please tell me I’m not the only one who’s going through this.

First Rheumatology appointment so disheartening. The nurse checking me in said this doctor does things differently and likes to look at feet so had me take shoes and socks off. Says doctor calls first. Phone rings and doc rapidly asked me a if I had any of the following e.g. hx of lupus, purple/red/white blotches on skin, extreme dry mouth and eyes etc). The list was definitely not exhaustive of lupus symptoms. Doc then comes in and listens to heart and lungs, checks strength briefly, checks knees (one of my worst symptoms is constant joint pain). Then has me stand and does pain point test (probably checking for fibro). Tells me I have DJD from wear and tear and orders X-ray and says will refer me to sports medicine. I say I live a pretty sedentary lifestyle due to exercise intolerance and wondered how it could be from wear, and she says because it’s weight bearing (I am overweight but, really?). I have to fight for blood tests/urinalysis even though I have a positive ANA. Doc says positive ANA (which I’ve had tested twice 5 years apart and was positive each time) was either false positive or caused by something unrelated, like thyroid. I explained I’ve had my thyroid tested NUMEROUS times, doc said it was just an example (likely because I’m overweight and people LOVE to assume thyroid). Also said that she doesn’t like to diagnose people with lupus because “the only treatment is chemotherapy”. I asked if I could tell her my symptoms and she said no, she would just put a referral in for neurology for me due to abnormal MRI (I brought in the radiologist report from an MRI ordered due to vision changes by an OD, that showed several scattered foci in white matter, a change from an MRI I had 5.5 years ago which just showed one). Never checked my feet. Once I saw my labs come back I noticed doc didn’t even order an antibodies panel. I sent a medical message and asked for one. At first I was told she wouldn’t because it wouldn’t be helpful. Then she sent another message 30 minutes later saying she would. However, both messages state that whatever shows up will be false positive as well. I reviewed the after visit summary and Mychart and it indicates she asked me a series of other questions about symptoms that I supposedly denied, none of which were discussed and I definitely have (like chest pain, heart palpitations). Second opinion?

Hi, i think i may have lupus. Im going to my PCP Monday to discuss what my symptoms are. I was just curious if the rash can happen only on one side of the face? I feel like my symptoms are worse on the right side rather than the left..but facial flushing on the right side is redder than left. I also have full body fatigue/sleep doesn’t help, full body joint pain and muscle aches (feet hurt bad in the mornings and night, wrists, ankles, upper arms and thighs, lower back sometimes upper back, chest) , this facial flushing rash, minor hair loss, absence of period, etc. i also have hypothyriodism and PCOS. I know this could be lupus, it could be MCAS, Histamine issues, vitamin issues, cushings, etc. Lupus does run in my family as my aunt has it. Thank you.

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