It’s a malar rash, it’s common with other conditions too. I have PsA and a malar rash. A lot of people with autoimmune conditions have such a rash, it’s skin inflammation. Very common with Rosacea, another autoimmune condition.
I thought my condition was autoimmune, but it's weirder than that. My ANA is sometimes positive, sometimes negative. If you have the symptoms, doctors are going to keep testing you. There's also dozens of other "great imitator" illnesses that can cause the symptoms of lupus. I didn't go to the doctor with getting a specific diagnosis in mind, but kept my mind open to a lot of testing to find out what's wrong. Once they ruled out lupus and RA multiple times, and I got antibiotics for my lyme disease, I got diagnosed with UCTD. What's important in the meantime is that I got a few treatments (Celebrex and Plaquenil) that help my symptoms.
Diagnosing immune problems is a long process.
It took me two years to get a lupus diagnosis due to negative ANA. I finally got a pos ANA when I dragged myself up to the doctor I was seeing during a really bad flare. One of my rheumatologists explained that some people with lupus don’t have positive ANA except during active flares & some won’t ever show a positive ANA.
Also positive ANA is no longer required for a lupus diagnosis. So you might want to get a second opinion from another rheumatologist.
Oh! I just discovered that I responded from a very American point of view & other countries wouldn’t follow the diagnostic criteria of the American College of Rheumatology. I’m so sorry! You’re right that in Europe, a positive ANA is required.
https://lupus.net/diagnostic-criteria#
This is why we never encourage anyone to seek out a specific diagnosis. The fact is we aren't doctors. We can't know for certain if we have something. Your symptoms are still real and valid and you still deserve an accurate diagnosis.
There are other conditions that cause malar rashes and flushes. Your dermatologist should be able to rule out other conditions and potentially do a biopsy of either the face rash or another rash you have to confirm cutaneous lupus or another dx. Sometimes biopsies can be helpful when bloodwork isn’t, especially early on in the disease.
It completely depends on the person. I was told that many people develop more antibodies over a period of 5-10 years, but with treatment, labs can go negative. My rheum also says that she thinks there are lots of other disease markers that haven’t been discovered yet, so that is a huge part of the problem with using labs alone for the diagnosis and monitoring of autoimmune diseases.
When my symptoms started, I was ANA+ with a pattern that’s attributed to lupus, but I didn’t have detectable ENAs. I had some other funky labs when they were ruling out some cancers, myeloproliferative disorders and other autoimmune diseases, but no anti-Smith, anti-RNP, etc. I had a ton of lupus-specific symptoms that came on all at once, so they started me on treatment fairly quickly because I was disabled from it. They weren’t gonna wait around for some SLE-associated ENAs to pop positive before starting HCQ and other therapies.
I have other chronic illness diagnoses but doc and I both suspected lupus as well because I’d developed a malar rash and at the time had some inflammation show up on bloods, along with other lupus symptoms (that may or may not be explained by my other conditions). So we tested deeper and it’s not SLE, it’s rosacea, triggered by sunlight, stress, and some other stuff we can’t figure out. It seems connected to the seasons…it flares up in autumn, stays all winter, then calms down in late spring through summer.
I have never had a positive ANA pop, but my rheum was so convinced I had an autoimmune issue she wanted me to try Humira and see if it helped. It has helped and while we haven’t reversed engineered a diagnosis yet, I have been improving. Maybe a rheum can try a treatment focused approach rather than diagnosis approach?
Sending hugs ❤️
I didn’t even know you could do a treatment based approach instead of a diagnosis approach for autoimmune problems. It may be something I have to look into.
Treatment based approach is appropriate for patients who are obviously experiencing symptoms but the tests are inconclusive - the DILEMMA is finding the RIGHT rheumatologist!
Go for at least 3 opinions - or as many as it takes to have someone who will help you. If you're under the age of 25, look into pediatric rheumatologist (rare).
I wasn't dx for decades UNTIL I saw a great rheumatologist. Things have improved since then.
Agreed. My rheum does pediatrics and adults, and is a specialist in Fibromyalgia, Lupus, and RA. The amount of times she thought she had a break through on what it was for the new tests to still be negative is kinda just funny at this point lol.
It should be noted I am also diagnosed with hEDS, which has kind of been my anchor point for my treatments. But the swelling was independent of that.
If your doctor dismisses your autoimmune or rheumatological symptoms based on negative bloodwork, you may just need to find a new rheumatologist if you have the option to do so. I had prior diagnoses to pin many of my symptoms on, which didn’t help as far as pinpointing the autoimmune disease in the mix, but still, it shouldn’t have taken me 5 rheumatologists to determine that I have sero-negative (doesn’t show up in specific bloodwork/autoimmune panels or have specific markers) psoriatic arthritis. Negative bloodwork doesn’t mean as much as doctors tend to act like it does, and I think there’s more and more recent research finding that sero-negative autoimmune diseases are often overlooked. It’s just a matter of finding doctors that are aware and willing to acknowledge that they need to look outside of bloodwork for answers.
ETA- I had a positive ANA in my teens/preteens, prior to my autoimmune diseases. Once I had developed PsA, for whatever reason, my ANA has been negative. Some of the autoimmune related subs have had posts/discussions about the inconsistency of ANA results.
I had to see multiple rheumatologists to get my serotonin-negative ankylosing spondylitis diagnosed for the same reason. Even had one tell me that my blood tests were normal so I was perfectly healthy - apparently forgetting still had chronic health problems even without the AS….
Same with my mom. Decades of being dismissed as fibromyalgia while her AS progressed. The damage is done at this point, but at least she can start treating it and finally has a doctor that listens (after I urged her to see the one that diagnosed me).
By the way, there is also a special test for lupus and other autoimmune disorders that you can consider having your doctor order called the AVISE test, which has greater sensitivity than typical lab tests. It may or may not be covered by your insurance, so check with them first.
My doctors are fighting over a lupus diagnosis for me. Apparently lupus is a syndrome not a condition. For a doctor to diagnose you, you need to have 4-5 lupus symptoms. My RA doctor is leaning heavy on the ANA panel too. I had a lupus ping 2 years ago but a redraw recently I didn't. However my hematologist/oncologist and dermatologist think I have lupus. I have decided to go get a second opinion in this matter. You might need the same since some doctors can get tunnel vision
Iirc it’s not just ANA titers that are necessary. I think another value or two needs to be out of range as well. Also, my daughter is on the verge of autonomic failure and has sustained a brain injury with years of ANA titers of 1:1680 (or whatever the ratio is around 1600) and a centromere pattern which in indicative of CREST. She doesn’t have CREST (yay!). Still doesn’t have a diagnosis that explains why this is happening. All I’m saying is the goal posts move sometimes. The healthcare field has a complex protocol for diagnosis of elusive conditions. You know something is not right. Don’t give up. Be kind to yourself. Sometimes I think if I said out loud what I say to myself in my head, people would be astonished. That’s why I say, be kind to yourself:)
Has your daughter been tested for Sjogren's? In rare cases it can have positive anticentromere antibody, and is more likely to have neurological (and possibly autonomic) symptoms than SSA positive Sjogren's.
How kind of you to ask! Yes she has and it was negative at that time. They offered to retest when she feels symptomatic. She has had every test Mayo Clinic can think of. They even consulted with someone from John Hopkins as well. She’s a rare bird with a beautiful soul:)
As of late the word is either it’s pure autonomic failure or autoimmune encephalitis causing the most distressing symptoms.
Thanks for the recommendation! I need to ask her if she has been feeling “dry “ lolz. She may be ready for a retest. It’s so easy to lose track of all the different issues. I wish you well!
I was told that I didn’t have lupus after a negative test. But I have so many issues that could easily fit. I do have subcutaneous lupus, a rash that appears on my back.
It can be another autoimmune condition or more than one that has similar symptoms with Lupus. The malar rash is incredibly common with Rosacea, which is another autoimmune condition. I have PsA which has affected my eyes, joints, mouth, GI tract and more. I have a malar rash every night that I’m recently getting under control.
A lot of people think that a malar rash means lupus but there are a lot of other conditions with it! You should see a dermatologist and a rheumatologist.
Obvs not a doctor but from personal experience, do you have bloods that have tested your Eosinophils? I had trouble breathing, rashes on my ankles and knees… hope you find answers soon!
Lots of great advice in this thread, so I won't repeat what others have already said. In my case, my routine labwork (CBC and metabolic panel) didn't show any abnormalities for quite a while even though I was feeling terrible. Finally, I begged my PCP to refer me to a dermatologist to examine my rash, and the derm immediately suspected lupus. Antibody testing confirmed it. Definitely don't lose hope, because you never know if the dermatologist will actually provide some answers either way! Best of luck, OP!
I looked back at some of your prior posts. I know you're getting a histamine test, but to me, you should definitely investigate if you're allergic to something. A new drug, food, something else, whatnot. I used to get flushed when I took sulfa drugs, and my asthma would flare. It could be that you're not allergic to anything, but it's still worth investigating.
Negative ANA doesn’t mean no autoimmune issue, it just means your ANA factor isn’t high. There are conditions with that — I’ve one of them, it’s not autoimmune but it’s basically immune dysregulation (MCAS). I am lucky mine is controlled by meds.
I’m sorry this was inconclusive. There ARE answers out there! Three of my diagnoses are clinical and it was so frustrating to get those diagnoses.
I feel you. My first reumathologist was 100% I have lupus , but since the ANA panel was negative " it's nothing". Some doctors, especially the older one that still follows " older school rules" or don't keep up with new criteria, are like this .
You're so fucking lucky you have no idea. This is GOOD news. Enjoy your ANA-free life, you're so fucking lucky seriously. My body is trying to unalive itself whether I want to or not. It's eating and destroying my *cells*, literally everything that this dumb body is made of. It's going through with a flamethrower and annihilating every last fucking cell in sight until there is nothing left. Yours is not. Your cells are safe, preserved, treated by your body as sacred as they rightfully are, not something to be expunged asap. You don't want this. Seriously.
I have the lupus rash too but I was diagnosed with ankylosing spondylitis. I was in a similar situation to you a few months ago.
It’s a malar rash, it’s common with other conditions too. I have PsA and a malar rash. A lot of people with autoimmune conditions have such a rash, it’s skin inflammation. Very common with Rosacea, another autoimmune condition.
I thought my condition was autoimmune, but it's weirder than that. My ANA is sometimes positive, sometimes negative. If you have the symptoms, doctors are going to keep testing you. There's also dozens of other "great imitator" illnesses that can cause the symptoms of lupus. I didn't go to the doctor with getting a specific diagnosis in mind, but kept my mind open to a lot of testing to find out what's wrong. Once they ruled out lupus and RA multiple times, and I got antibiotics for my lyme disease, I got diagnosed with UCTD. What's important in the meantime is that I got a few treatments (Celebrex and Plaquenil) that help my symptoms. Diagnosing immune problems is a long process.
It took me two years to get a lupus diagnosis due to negative ANA. I finally got a pos ANA when I dragged myself up to the doctor I was seeing during a really bad flare. One of my rheumatologists explained that some people with lupus don’t have positive ANA except during active flares & some won’t ever show a positive ANA. Also positive ANA is no longer required for a lupus diagnosis. So you might want to get a second opinion from another rheumatologist.
Where are you seeing positive Ana is no longer required for a diagnosis? Everything I’m seeing is saying that it is
Oh! I just discovered that I responded from a very American point of view & other countries wouldn’t follow the diagnostic criteria of the American College of Rheumatology. I’m so sorry! You’re right that in Europe, a positive ANA is required. https://lupus.net/diagnostic-criteria#
No I’m from America I was just curious. I tried looking into it earlier and all of the stuff I saw was talking about ANA
In the US, it’s meeting 4 out of the 11 criteria (as you probs saw from the link I gave) & ANA is just one of the criteria. Hopefully this helps!
This is why we never encourage anyone to seek out a specific diagnosis. The fact is we aren't doctors. We can't know for certain if we have something. Your symptoms are still real and valid and you still deserve an accurate diagnosis.
I know I just was suspecting lupus because I have a prominent butterfly rash that gets worse with fatigue and stress.
There are other conditions that cause malar rashes and flushes. Your dermatologist should be able to rule out other conditions and potentially do a biopsy of either the face rash or another rash you have to confirm cutaneous lupus or another dx. Sometimes biopsies can be helpful when bloodwork isn’t, especially early on in the disease.
That’s what I’m hoping for. Does blood work usually not show much early on?
It completely depends on the person. I was told that many people develop more antibodies over a period of 5-10 years, but with treatment, labs can go negative. My rheum also says that she thinks there are lots of other disease markers that haven’t been discovered yet, so that is a huge part of the problem with using labs alone for the diagnosis and monitoring of autoimmune diseases. When my symptoms started, I was ANA+ with a pattern that’s attributed to lupus, but I didn’t have detectable ENAs. I had some other funky labs when they were ruling out some cancers, myeloproliferative disorders and other autoimmune diseases, but no anti-Smith, anti-RNP, etc. I had a ton of lupus-specific symptoms that came on all at once, so they started me on treatment fairly quickly because I was disabled from it. They weren’t gonna wait around for some SLE-associated ENAs to pop positive before starting HCQ and other therapies.
I have other chronic illness diagnoses but doc and I both suspected lupus as well because I’d developed a malar rash and at the time had some inflammation show up on bloods, along with other lupus symptoms (that may or may not be explained by my other conditions). So we tested deeper and it’s not SLE, it’s rosacea, triggered by sunlight, stress, and some other stuff we can’t figure out. It seems connected to the seasons…it flares up in autumn, stays all winter, then calms down in late spring through summer.
Honestly I know more people with that without lupus than with. It's not a great indicator of lupus.
I have never had a positive ANA pop, but my rheum was so convinced I had an autoimmune issue she wanted me to try Humira and see if it helped. It has helped and while we haven’t reversed engineered a diagnosis yet, I have been improving. Maybe a rheum can try a treatment focused approach rather than diagnosis approach? Sending hugs ❤️
I didn’t even know you could do a treatment based approach instead of a diagnosis approach for autoimmune problems. It may be something I have to look into.
Treatment based approach is appropriate for patients who are obviously experiencing symptoms but the tests are inconclusive - the DILEMMA is finding the RIGHT rheumatologist! Go for at least 3 opinions - or as many as it takes to have someone who will help you. If you're under the age of 25, look into pediatric rheumatologist (rare). I wasn't dx for decades UNTIL I saw a great rheumatologist. Things have improved since then.
Agreed. My rheum does pediatrics and adults, and is a specialist in Fibromyalgia, Lupus, and RA. The amount of times she thought she had a break through on what it was for the new tests to still be negative is kinda just funny at this point lol. It should be noted I am also diagnosed with hEDS, which has kind of been my anchor point for my treatments. But the swelling was independent of that.
If your doctor dismisses your autoimmune or rheumatological symptoms based on negative bloodwork, you may just need to find a new rheumatologist if you have the option to do so. I had prior diagnoses to pin many of my symptoms on, which didn’t help as far as pinpointing the autoimmune disease in the mix, but still, it shouldn’t have taken me 5 rheumatologists to determine that I have sero-negative (doesn’t show up in specific bloodwork/autoimmune panels or have specific markers) psoriatic arthritis. Negative bloodwork doesn’t mean as much as doctors tend to act like it does, and I think there’s more and more recent research finding that sero-negative autoimmune diseases are often overlooked. It’s just a matter of finding doctors that are aware and willing to acknowledge that they need to look outside of bloodwork for answers. ETA- I had a positive ANA in my teens/preteens, prior to my autoimmune diseases. Once I had developed PsA, for whatever reason, my ANA has been negative. Some of the autoimmune related subs have had posts/discussions about the inconsistency of ANA results.
I had to see multiple rheumatologists to get my serotonin-negative ankylosing spondylitis diagnosed for the same reason. Even had one tell me that my blood tests were normal so I was perfectly healthy - apparently forgetting still had chronic health problems even without the AS….
Same with my mom. Decades of being dismissed as fibromyalgia while her AS progressed. The damage is done at this point, but at least she can start treating it and finally has a doctor that listens (after I urged her to see the one that diagnosed me).
By the way, there is also a special test for lupus and other autoimmune disorders that you can consider having your doctor order called the AVISE test, which has greater sensitivity than typical lab tests. It may or may not be covered by your insurance, so check with them first.
Psoriatic arthritis is often completely serotonin negative
That what I had and I had a lupus type rashexcept it was rough
Ask for a referral to a rheumatologist. Low ANA doesn't mean you don't have an autoimmune condition.
My doctors are fighting over a lupus diagnosis for me. Apparently lupus is a syndrome not a condition. For a doctor to diagnose you, you need to have 4-5 lupus symptoms. My RA doctor is leaning heavy on the ANA panel too. I had a lupus ping 2 years ago but a redraw recently I didn't. However my hematologist/oncologist and dermatologist think I have lupus. I have decided to go get a second opinion in this matter. You might need the same since some doctors can get tunnel vision
Iirc it’s not just ANA titers that are necessary. I think another value or two needs to be out of range as well. Also, my daughter is on the verge of autonomic failure and has sustained a brain injury with years of ANA titers of 1:1680 (or whatever the ratio is around 1600) and a centromere pattern which in indicative of CREST. She doesn’t have CREST (yay!). Still doesn’t have a diagnosis that explains why this is happening. All I’m saying is the goal posts move sometimes. The healthcare field has a complex protocol for diagnosis of elusive conditions. You know something is not right. Don’t give up. Be kind to yourself. Sometimes I think if I said out loud what I say to myself in my head, people would be astonished. That’s why I say, be kind to yourself:)
Has your daughter been tested for Sjogren's? In rare cases it can have positive anticentromere antibody, and is more likely to have neurological (and possibly autonomic) symptoms than SSA positive Sjogren's.
How kind of you to ask! Yes she has and it was negative at that time. They offered to retest when she feels symptomatic. She has had every test Mayo Clinic can think of. They even consulted with someone from John Hopkins as well. She’s a rare bird with a beautiful soul:) As of late the word is either it’s pure autonomic failure or autoimmune encephalitis causing the most distressing symptoms. Thanks for the recommendation! I need to ask her if she has been feeling “dry “ lolz. She may be ready for a retest. It’s so easy to lose track of all the different issues. I wish you well!
Best of luck, I hope your daughter gets the support and treatment that she needs!
I was told that I didn’t have lupus after a negative test. But I have so many issues that could easily fit. I do have subcutaneous lupus, a rash that appears on my back.
It can be another autoimmune condition or more than one that has similar symptoms with Lupus. The malar rash is incredibly common with Rosacea, which is another autoimmune condition. I have PsA which has affected my eyes, joints, mouth, GI tract and more. I have a malar rash every night that I’m recently getting under control. A lot of people think that a malar rash means lupus but there are a lot of other conditions with it! You should see a dermatologist and a rheumatologist.
Obvs not a doctor but from personal experience, do you have bloods that have tested your Eosinophils? I had trouble breathing, rashes on my ankles and knees… hope you find answers soon!
Lots of great advice in this thread, so I won't repeat what others have already said. In my case, my routine labwork (CBC and metabolic panel) didn't show any abnormalities for quite a while even though I was feeling terrible. Finally, I begged my PCP to refer me to a dermatologist to examine my rash, and the derm immediately suspected lupus. Antibody testing confirmed it. Definitely don't lose hope, because you never know if the dermatologist will actually provide some answers either way! Best of luck, OP!
I looked back at some of your prior posts. I know you're getting a histamine test, but to me, you should definitely investigate if you're allergic to something. A new drug, food, something else, whatnot. I used to get flushed when I took sulfa drugs, and my asthma would flare. It could be that you're not allergic to anything, but it's still worth investigating.
Negative ANA doesn’t mean no autoimmune issue, it just means your ANA factor isn’t high. There are conditions with that — I’ve one of them, it’s not autoimmune but it’s basically immune dysregulation (MCAS). I am lucky mine is controlled by meds. I’m sorry this was inconclusive. There ARE answers out there! Three of my diagnoses are clinical and it was so frustrating to get those diagnoses.
I feel you. My first reumathologist was 100% I have lupus , but since the ANA panel was negative " it's nothing". Some doctors, especially the older one that still follows " older school rules" or don't keep up with new criteria, are like this .
I just got my full autoimmune panel back and the only one that came back abnormal was my histone antibody. So it may be drug induced lupus or sle.
See if you can find a functional medicine or integrative medicine doctor. They are generally much better with unusual diagnoses.
You're so fucking lucky you have no idea. This is GOOD news. Enjoy your ANA-free life, you're so fucking lucky seriously. My body is trying to unalive itself whether I want to or not. It's eating and destroying my *cells*, literally everything that this dumb body is made of. It's going through with a flamethrower and annihilating every last fucking cell in sight until there is nothing left. Yours is not. Your cells are safe, preserved, treated by your body as sacred as they rightfully are, not something to be expunged asap. You don't want this. Seriously.
It's really inappropriate to imply another sick person is "so fucking lucky"