Just wanted to add: I’m not taking anything anyone says as a diagnosis or medical advice I promise.
I was just curious what people thought it looked like, and just gave info for context. I promise I’m not thinking if someone says it does look like the lupus rash that I’m not taking it as a diagnosis.
I’m posting cause I need help. I live in the US (where the doctors for the most part only want to be rich and literally don’t care about their patients 😞). My names Caroline. Im 36. I started having this rash about a year ago and it comes and goes. I already have one autoimmune disorder - Hashimotos. But in the last year, I’ve also been having new symptoms like joint pain, fevers, sores in my mouth and just recently a sore in my nostril (which I’ve never had before!) I’ve been chronically ill for about 9 years. My Dr thinks I have spinal compression but they can’t get me in for an mri until June 😞 having a LOT of neurological symptoms. ESR and CRP have been high since last June, but ANA by Elisa was negative both times. They refuse to do any of the other lupus panel tests. Im having cardiac symptoms, evidence of liver and kidney distress they are ignoring cause it’s abnormal but I guess not “abnormal enough”? 😞 I just found this site on google and I hope it’s ok for me to post… but my main question is, to people with diagnosed lupus, does this look like a lupus rash? I have other pics too but it would only let me put one. Thanks🙏
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hi, we can’t really diagnose on this site but I would keep taking pictures of any rashes you get and log everything down. It took me about 10 years to get diagnosed. Over the years I’ve been in hospital with a lot of weird illnesses all of them kept getting me referred to Rheumatology, most were serious inflammation. I was lucky to get referred quickly to a dermotologist who diagnosed lupus with a biopsy of my rash. It’s so frustrating trying to get diagnosed as you know something is wrong and you keep getting fobbed off. Log all your symptoms and keep taking pictures.
Thanks. Yah.. I’m definitely taking picture of everything now, but the drs in the US just like literally don’t care at all. I’ve been sick 9 years so far. But I’ve trying to document more.. like every little thing. But in terms of this, I was just curious if it looked like the lupus rash to others who have lupus diagnosed. I definitely know that saying it looks like one isn’t a diagnosis, I would never expect a diagnosis online. The reason I asked is cause if it does look like lupus malar rash, I would just push my drs a little more about getting more tests and just try to advocate for myself more to try to get the drs to do literally anything. I promise I’m not taking or gona take anything anyone says as official medical advice or diagnosis. I just wanted to know from people who are already diagnosed if it does look like one. Im just feeling really hopeless. 😞
I have Lupus and when my face goes like that I know I have something autoimmune going on - but the Lupus rash is more granular and rough looking - if you have Hashi’s that can cause many obscure symptoms.
Ok. Thanks for your input. I really appreciate it. I’ll keep it in mind as I document more for my drs and try to compile some stuff to advocate for some more tests that would give us more info but they refuse to do them. They won’t even put in a referral for me to either the rheumatologist or dermatologist 😞 they refused me asking to see the rheumatologist but with the dermatologist they were only willing to send pics and the dermatologist responded back they couldn’t see me for 9 months and didn’t think it was necessary anyway and they just prescribed me doxycycline for “rosacea” saying that’s what they think it is, even though they never saw me in person. I don’t think it’s rosacea because it’s never like pimply or broken vessels or like the description of rosacea. It can come on suddenly, but then go away just as quickly. Ever since it started too, I go outside in the sun and within a lil while it’s like this. I think that’s more lupus than rosacea but I could be wrong. I just started the doxycycline yesterday, so I don’t see any changes yet. When the rash happens, it feels like my cheeks are on fire or kinda really hot and being eaten by acid on my cheeks. It’s so frustrating have so many weird symptoms over the last 9 years, where every year I’m getting worse, and just continuously getting gaslit and dismissed by the doctors, and getting told everything’s “normal” and “fine” even when my lab results literally SAY “abnormal result”, along with my decline in health. Im feeling so hopeless and so scared. Im so sorry it took you so long to get the diagnosis, although I do know that’s pretty common. Im so glad you were able to eventually though, and I hope you’re treatments are helping and that you’re doing as good as you can be, and I send you love and positive thoughts. Thank you so much for your input, I really appreciate it. Im really scared 😭😥🫂
If its lupus you should not be sunbathing. Use factor 50 all year on exposed areas and cover up as much as possible. Doxycycline can also aggravate lupus and inflammatory disorders. Hoping you get sorted soon. It did take me years too.
Thank you. I'm reasonably OK now but it does take some time to get sorted once you find a decent doctor, which for me was in 2007! Just wishing you well.
Oh you poor thing it took me 15 years to get official diagnosis of thyroid deficiency when literally walking round with 100 symptoms - had to go out of the country though - back to you now - what medication are you on if you can share and any diagnosis they have made ?
Oh my I’m so sorry but glad u got ur answers eventually. I’m really thinking I’m going to have to leave the US too. Every abnormal test I have they just say “well, it’s not THAT abnormal so it’s fine”. One doctor even said word for word this to me last week, “so no answers as to what’s going on, but I hope you find some answers soon and feel better soon.” Word for word. After a lotttt of abnormal blood work . I have hashimotos I’ve had that since I was 15 or so. My thyroid antibodies are always through the roof high, but my TSH has only been abnormal twice. They say my thyroids fine, even though I have tons of symptoms like hot/cold intolerance, severe fatigue, headaches, that can be thyroid. They never do any other thyoid tests except the TSH and the thyroid antibodies. I’ve asked for an ultrasound of my thyroid because of the symptoms but they said it wasn’t necessary. They run regular CBC all the time. Usually, globulin is abnormal, albumin is abnormal, a lot of times white blood cells are abnormal, anemia on and off over the years, neutrophils high and leukocytes low. They run a metabolic panel a lot and usually is okish. Sometimes normal sometimes abnormal. Urine tests, blood in my urine but no protein or anything else right now on my most recent. But protein in urine on/off over the years. I had severe post partum preeclampsia twice where I almost died both times. Both times happened within a week of my baby being born. I have spinal problems. I have diagnosed asthma, depression, anxiety. They have run a rheumatoid factor that was negative. They ran CCP that was negative. They have run ANA by ELISA but says not detected. The last few years they run the CRP and ESR and they are always either both high, or ones high and not the other. They haven’t both been normal in maybe 2 years. They did an echo with dobutimine and had to push atrophine saw no ischemia but it was abnormal in that I had a flat blood pressure response. I’ve been having tachycardia every day. They also saw st t changes, and PVCs. The flat blood pressure response was weird cause over the last year they diagnosed me with hypertension unspecified. They won’t even let me see the ecg from during the echo to get a second opinion. Same with all my other scans, I can’t get any of them to try to even have a second opinion whether in the US or outside the US. They said I could get a new spinal mri cause of the neurological symptoms and they said they think it’s spinal compression now, but I couldn’t get an mri appt until June at the earliest. The last one they did a year and a half ago. They saw levoscoliosis (which my top spine has dextroscoliosis), they saw degenerative disc disease, they saw a disc protrusion L1-L2, facet arthropathy L4-5. They never did anything for any of that. I asked many times to try something, but they dismissed me every time. So now they are saying prob spinal compression now. Also diagnosed with chronic pain syndrome, weakness bilaterally, fibromyalgia (even though my symptoms never matched fibro and they didn’t do any test to exclude anything else when they said fibro. That doctor actually didn’t even tell me, that was early on with my medical stuff starting 9 years ago) Body pain that’s now progressed to joint pain over the last 2 years or so. I just started the doxycycline for the maybe rosacea. I’m on lyrica and endocet. I have nexplanon in my arm. It’s birth control. And that’s it.
in the US right now hysteria about pain medicine is crazy. The label everyone a drug seeker. They are even denying pain control unless Tylenol or ibuprofen after major surgeries now, even in end of life care! But between the muscle and joint pain and swelling, my back, severe fatigue, just all of it, I don’t have any quality of life without it. 😞
Difficult I know but are you able to get vitamin and minerals tested - hashi can cause deficiencies that can cause very weird symptoms- I know it happened to me !
When looking at my tests over the last few years, I do see a pattern with that. With the most recent one being a few weeks ago. But the Dr stil said even with all my symptoms that it’s “fine”. I’m feeling very discouraged. But I’m gona take a look at that info thank you ❤️🙏
I got responses like that also. It was a nightmare. I could not believe what was happening.
🙏 Praying hard things will come together🙏
Regroup.
Even though things seem complicated, sometimes doctors like the biggest challenges.
I used to draw paper person outlines and annotate with my symptoms, and all I knew, so it provided a summary that they could glance at, with everything there.
These records, along with a journal, became my friend when nobody seemed to help.
If you post on individual symptoms people here will share their experiences. That has helped me the most.
One of the more recent I had to calculate it but my NLR was 17 and PLR was 13. And the other time it was NLR was 4 and PLR was 171.9 I haven’t calculated all the other times yet. It’s been every time they have done blood in the last few years though. Where the neutrophils would be high and lymphocytes just barely above being low or actually being low. I’ve also had anemia in most of my blood tests the last few years. You all have helped me so much finding stuff that I can compile and try to present to my doctor to try to advocate for more testing. Like I am so grateful for you all trying to offer help I’m in tears. The one thing I’m really scared about is if I put together information to present to my doctor to try to advocate for more tests, there is the possibility that she gets really mad (like the mindset of how DARE I suggest anything when I’m not a doctor) and if that happens, they could abandon me as a patient. Patient abandonment has been happening SO MUCH all over the United States, so it’s been happening in all 50 states. I don’t understand why that’s not illegal, but it’s mostly the patients with chronic or complex illnesses and especially any ones that have been on opiate pain medicine. But… I feel like if I don’t put the info together to present to her and at least try to get my doctors to actually help me figure out whether it’s lupus, or ms (which are the 2 I think are most likely and match my symptoms the most) if I don’t at least try…. I’m not strong enough to keep going. I feel like such a stupid weak person for saying that. But the last 9 years…. I’ve lost everything to my medical problems. And every year it’s been getting worse in different ways, losing more function and quality of life, can barely even stay away most days cause I’m just so so tired that my eyes will start involuntarily closing, the swelling that I’ve had in my ankles feet and toes and abdomen and face, which now in the last few months my hands have started swelling, severe memory problems, the fevers on and off and on and off are just taking a toll on me, and all the other stuff, plus just being treated like I’m either faking it, or “drug seeking”, or being told I’m “too young” or that it’s just my depression, basically getting treated like I’m garbage by every doctor I see. It really takes a toll. But you all are such chronic illness warriors! You are all such beautiful people and I can’t express my gratitude enough you all trying to help me in whatever way you can and with all the information. Thank you! ❤️🫶🏻🫂🙏
Thank you for these, I didn’t even realize! Maybe they can help me advocate too cause my problem is my doctors not wanting to do any other tests except the basic ones even if a more expensive test might show positive. If it was still before 2019 when they changed the lupus classification, I would have exceeded the criteria. But with the addition of having to have a positive ANA once, now I’m out of luck. Cause the drs here won’t treat for it even if u have every other symptom unless you have a positive ANA even though it doesn’t specifically mean you have lupus or not. I have every other symptom, except the ANA. It’s so frustrating bcuz negative ANA lupus is real. And my body’s always reacted different than normal to meds so I wouldn’t be surprised if I was one of the negative Ana ppl. For example the dentist always comments about how much numbing stuff they have to use they will be like “how do you still feel that?” And I’m always like I have to idea. They had ti use more stuff to put me under too when I had my appendix out when I was younger back in 1999. They were not doing the laparoscopic back then here (well at least wheee I grew up in New York), so it was the full knock out open abdomen surgery. I was 11. I’m 36 now. It’s so frustrating but I really do appreciate your suggestion thank you! ❤️❤️
I had to find a doctor who I trusted. I asked here on this Forum where others went.
Diagnosed with 'Undifferentiated Connective Tissue Disorder (UCTD) in the end.
But caring doctors, if there are symptoms of Lupus, consider it Lupus. They know the 2019 criteria intended for research only, have made it impossible for some of us. Seronegative diagnoses used to happen and yes, we all ask why they are not happening now (Some are losing their diagnoses too).
You are not alone. Maybe on the other side of the globe they don't use EULAR / ACR 2019 SLE Criteria. ..intended only for research not diagnosis.
Don't give up, just regroup, use the resources available online and contact Health Educators Lupus Foundation of America.
Watch all the Donald Thomas videos you can find too. Imagine he is your rheumy until you find one.
I realised I had got a connective tissue disorder, and much of this happened after getting covid before being vaccinated, and realised I needed a diagnosis so I could take hydroxychloroquine.
Dr Donald Thomas is one of my heroes as just watching his videos, prior to diagnosis, gave me confidence. I got a second hand copy of his book too, called 'The Lupus Encycleopedia', first Edition for £10 from Amazon. Was worth it.
Yah I need to get better pics. It looked different in person. Like I could draw a line around it with eyeliner. Clear as day the shape. But I just was absolutely failing to get a good pic. I’ll keep trying
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