Feel like I'm going in circles trying to figure out what's wrong. I think it's lupus!

[Flimsypickle]

Hey everyone! I’m a 25-year-old guy in the UK, about 180 cm/86 kg, dealing with what my rheumatologist suspects might be an autoimmune condition. I have chronic joint pain (knees, hips, lower back especially) and I’ve been getting a burning red rash on my cheeks and nose that looks like a malar rash—lasts a few days, then fades. Blood tests show borderline low C4 complement, borderline low kidney function (GFR around 63), and protein in my urine. My RBC, hematocrit, and hemoglobin dipped during a flare, too. We initially thought psoriatic arthritis (there’s some family history of psoriasis), but now there’s talk of lupus or another connective tissue disease, especially with this butterfly-like rash, possible photosensitivity (I’ve had severe sun reactions in the past), and weird fatigue flares that knock me out for a day or two, I'm unable to feed myself and do any of my normal daily tasks. My ANA and HLA-B27 are both negative, but I’ve heard that sometimes lupus can still sneak by those tests.

I’m on ibuprofen and a few other meds (omeprazole, hydrocortisone cream, salbutamol inhaler, cetirizine) but feel like things are getting progressively worse: joint pain, rashes on my forearms and scalp, random bouts of exhaustion, gut inflammation, and even some eye redness and burning. My rheumy is open to more tests but isn’t sure yet if I should do a skin biopsy, repeat immunological panels, or more kidney screenings. Anyone here ever deal with something similar, or know if a biopsy might help confirm if it’s lupus or psoriasis? I’d really appreciate any advice—feels like I’m stuck in limbo waiting for a solid diagnosis. Thanks in advance!

[sarahalice]

Hi. Welcome to the group.

Definitely looks like a butterfly rash.

Ibuprofen can make renal functions worse. A lot of us are told not to use it, might be best to find something else.

Try it see if you have triggers. Are you worse after a drink, fatty foods, processed foods or a stressful day. Trying to get on top of triggers can really help,

All the best, Sarah

[Murp17 in reply to sarahalice]

Hi welcome

I agree with sarahalice it definitely looks like the butterfly rash. I would push for your rheumatologist to do the biopsy as this is how I was diagnosed I was advised it’s the best way to diagnose Lupas. At least this way you will find out either way and if it’s not lupas then they can look at other options

Hope this helps

[Flimsypickle in reply to Murp17]

Thank you both so much for replying—it really means a lot! I’ve been dealing with these symptoms for what feels like forever and still don’t have clear answers. The butterfly rash definitely flares in the sun, but stress also seems to set it off. I’m already on a very strict diet because carbs really mess up my gut (my calprotectin is high), and that seems to trigger flare-ups, too.

I’ve also got this persistent rash in the “pit” of my forearm—it started on my left arm about 6 months ago, then spread to my right arm in the exact same spot a couple months ago. It looks like hives but doesn’t act like them since it never really goes away. I can’t figure out what triggers it because it seems totally random.

The joint pain can be brutal. I had one episode where I couldn’t bend my knee at all, and it honestly felt worse than a broken bone. Plus, I get constant pain in my feet, ankles, knees, hips, lower back, shoulders, wrists, and hands.

A couple days ago, I had a big flare after driving in the sun for just an hour—my face lit up with a butterfly rash, my body was shaking, I felt like I’d been hit by a truck, had chest pains, and my hands went totally pale (almost gray). That’s a huge reason I’m reaching out: my girlfriend’s really worried, and so am I.

I only take ibuprofen (plus omeprazole) when things are really bad, I wasn’t on it at all when my renal function tests first came back borderline. My GP took ages to refer me to rheumatology, so I’m now seeing someone privately who’s trying to get MRIs done and fast-track my referral as urgent. But even he has ruled out lupus due to my bloods being fine, but I've had multiple A&E doctors telling me I have lupus.

Thank you again for your advice—especially about the biopsy. I’ll definitely push for it with my rheumatologist. It helps so much to hear from people who get how frustrating this all can be. It feels really good to be heard

Forearm rash flared like hives but doesn't go away leave red patch 6 months +

[Murp17 in reply to Flimsypickle]

Hi

I need to wear factor 50 when in the sun as it protects your skin even on cold days if the sun is shining I would highly recommend getting a good sunscreen as this will protect your skin

Hope you get answers soon

[Hoofprints in reply to Flimsypickle]

So sorry you are going through this. It might be worth asking your rheumatologist to run a blood test to look for the anti-C1q antibody to rule out urticarial vasculitis syndrome, which can present like lupus with low C3and C4 , rashes and all the other symptoms of lupus but without the positive findings of ANCA or ANA in the blood.

Treatment is much like that for lupus - I'm on Hydroxychloroqine and low dose steroids.

Good luck and don't give up.

[Flimsypickle in reply to Hoofprints]

Thanks so much for sharing your insights—I hadn't heard of urticarial vasculitis syndrome or the anti-C1q antibody test before, but it sounds really relevant, especially given my persistent rash. I'll definitely bring this up with my rheumatologist at my next appointment. It's reassuring to hear there are treatment options similar to lupus. Thanks again for your advice and encouragement; I won't give up until I get some clear answers!

[Flimsypickle in reply to sarahalice]

Hi Sarah,Thanks so much for your reply and advice! You're spot-on about ibuprofen-I've stopped taking it completely now after hearing everyone's experiences. I've definitely noticed triggers; carbs (apart from fruit) are a big no-go for me, and while healthy fats are fine, any takeaway leaves me feeling awful, like l've been hit by a bus. Stress is another massive trigger- it can wipe me out completely, sometimes putting me in bed for days. Really appreciate your support and kindness. Thanks again!

[sarahalice in reply to Flimsypickle]

Stress is my trigger too.Around 6yrs after diagnosis I had to apply for ill health retirement, which i got. Life and lupus is much better now.

Things that might help:-

Wear SPF50 everyday, even the cloudy days.

Ask yr doc for muscle relaxants, they help with the pain.

Make a note of any symptoms.

And keep all the medical reports you get, you might need them in the future.

Wishing you all the best, Sarah

[Mamasquidy]

Re the rash, if you look at the rare side effects of Omeprozole you will see Discoid Lupus. Check out with your GP whether you should stop taking it.

[Flimsypickle in reply to Mamasquidy]

Thank you for your reply! My dad takes omraprazole so I've been taking them alongside ibuprofen to help with my belly problems from ibuprofen, I havnt actually been prescribed them from the GP, even with a high calprotectin they havnt prescribed be a single thing so Ive had to self medicate

[Tiggywoos in reply to Flimsypickle]

Are you under care of Gastro for your high calprotectin and have you had endoscopy ?

GI issues and associated joint issues and rashes can be very similar to lupus etc . But GI issues could also be running along side a lupus like condition . It’s complicated as you know 😔

I know it’s so tough when you’re in pain but please be careful taking anti inflammatories with high cal because it can hurt the bowel . The forum will sort you out and point you in right direction 😊

[Flimsypickle in reply to Tiggywoos]

Thanks for your reply—I haven’t been referred to gastro yet or had an endoscopy, despite the high calprotectin levels. It’s really frustrating as I'm just trying to manage symptoms on my own. I hear you about anti-inflammatories—I’ve stopped the ibuprofen now to avoid making things worse. Really appreciate your support!

[Mamasquidy in reply to Flimsypickle]

No worries. I took Omeprozole and then developed the rash on my face which spread everywhere. Dermatologist said I was probably pre-disposed and the Omeprozole triggered it. Turned out that I had been experiencing autoimmune symptoms for years. Worth going to your GP and stopping the Omeprozole. There are non-PPI type pills you can be prescribed for gastric issues, Famotidine for example. Good luck.

[Flimsypickle in reply to Mamasquidy]

Thank you again for highlighting this! I'll definitely stop taking Omeprazole and discuss alternatives like Famotidine with my GP. Your experience sounds very similar, so it's really helpful to know that Omeprazole triggered autoimmune symptoms for you. Appreciate your advice!

[FredaN in reply to Flimsypickle]

I understand your frustration, but you're really not supposed to take other people's medication. Do your GP and/or specialists know you take Omeprazole? If you're stuck in a cycle of Ibuprofen + Omeprazole, it's best to be honest with them. They can build a better picture of what's going on and stand a better chance of helping you.

I have psoriasis, so I wondered about psoriatic arthritis at the start too. The rheumatologist confirmed I had psoriasis on my back while all this was going on, but said "this isn't a picture of psoriatic arthritis we're looking at here" and thought it looked like a connective tissue disease. I think a history of autoimmune conditions within families raises the risk of you developing one yourself, but not necessarily the same one. I'm diagnosed with Undifferentiated Connective Tissue Disease, because my blood test results aren't fully showing Lupus at the moment.

What are your symptoms regarding digestive/gut inflammation and have you seen a gastroenterologist for them/had any tests done? Some of us have GI conditions like IBD in addition to Lupus, some of us have GI issues as a symptom of Lupus. Have you ever been tested for coeliac disease? It can cause some skin issues, so might be worth getting that checked out if you haven't already (I think you have to be eating enough gluten for 6 weeks+ when they do the blood test to get an accurate result). I tested negative for coeliac disease in blood tests, but find I feel worse if I eat gluten. You said something about eye redness and burning which also made me think of Dermatomyositis, but I'm not an expert in the other symptoms of this, so you might want to read up on that.

[Flimsypickle in reply to FredaN]

You're totally right—I shouldn't be self-medicating. My GP doesn’t currently know about the Omeprazole, so I'll be honest with them next time. Regarding gastro symptoms, I have persistent gut pain, bloating, and inflammation (high calprotectin), but I've not yet had a referral to gastro or tests like an endoscopy. I have been tested for coeliac disease and it was negative but I do actively avoid gluten. Your situation with Undifferentiated Connective Tissue Disease sounds similar to what I'm experiencing, so your insights are incredibly helpful—thank you!

[FredaN in reply to Flimsypickle]

If I were you I'd make an appointment with your GP and make a list of notes to take with you (maybe even two copies, then you can give them one to keep) and ask for a referral to Gastroenterology because of your symptoms and high calprotectin. Tell them about the Omeprazole and make sure you say how it helps, as they may just prescribe it to you anyway or suggest a better alternative. They'd probably monitor you once you start on it, so that might start the ball rolling to get a referral to Gastroenterology in the future if they say no to the referral now. If the GP is being stubborn, maybe ask your rheumatologist how you'd get referred to them - I've been referred by Rheumatology to Dermatology, Ophthalmology and Haematology so you might have more luck that way.

You might already be doing this, but take photos of any rashes/skin symptoms you get to show Rheumatology, as I found that better than trying to describe them. I hope all this info helps and you're not feeling overwhelmed by everyone's replies. Just ask questions here anytime, everyone has been so helpful to me in providing advice and reassure me that I'm not imagining my symptoms!

[RosieA]

The phase without a definitive diagnosis is often the most debilitating. We don't fully know the beast we will be living with. Deep breath! It can take a while for autoimmune diseases to emerge. Mine took several years and I moved from inflammatory arthritis, undifferentiated connective tissue disease to Lupus as each symptom evolved. It sounds as though you are getting some good investigative work done but it never hurts to politely push for more testing. It is rare, but Lupus can be ANA -ve as previously stated a biopsy would be more specific. My turning point was an echo cardiogram showing pericarditis.

I am very photosensitive and will experience very unpleasant physical reactions. Apart from a malar rash and fatigue, my heart rate will double or more and I won't be able to breath through my nose as it gets so swollen and can last for hours. This all started a couple of years before my Lupus diagnosis. Take as much precaution as you can. F50 even with our current low UV is essential. If you have your own car, think about investing in a UV protective film for the passenger and driver windows - a good dealership can do this for you and it cuts 99% of UV. The lamination in the front windows gives some UV protection.

Keep reaching out and do let us know how you get on if you feel able. All the best.

[Flimsypickle in reply to RosieA]

Thank you so much for your supportive words and for sharing your experience—it really means a lot. You're right, being in this uncertain phase is incredibly difficult, but hearing your journey gives me hope. I'll definitely take your advice on politely pushing for more investigations. Interesting about the ANA-negative Lupus and your experience with pericarditis; I'll mention this to my doctor. I'm also becoming more aware of photosensitivity, so I'll look into UV protection measures as you suggested. Really appreciate your guidance and kindness—I’ll keep you updated!

[RosieA in reply to Flimsypickle]

Your very welcome. Following on from the UV film. I found that this gave me a little of my life back as I wasn't having to count travel time in a car as UV exposure time. Sounds odd, but after an horrific photosensitive reaction after a journey of 4 hours coming home from Cornwall, I learned my lesson. I managed 9 hours to Northumberland- no problems. Think also, with the summer coming about how close you sit to South facing windows. The UV is already heading for 3 - low by most standards but for me - it starts to limit me. You can check daily UV levels on the Met Office weather (just extend the menu) and remember that over 70% of UV will penetrate through cloud cover.

Re-ANA -ve Lupus - look at articles on Google Scholar. These are more academic papers. It might support your discussions with professionals if you mention that you understand that x% present as -ve ANA and ask them to justify why this might not apply to you given your physical symptoms etc. Having said all that, remember my journey. These diseases are tricky and can throw curved balls, taking you away from what was originally thought.

[bofishandchips]

Hi,

I am a 73 yr old male. I was diagnosed with Lupus quite recently after starting with rheumatism like symptoms, predominantly on my hands, fingers and wrists. Ive had a few years with Chronic Kidney Disease (CKD) at level 3b and the Renal doctor couldn't figure out why I had it.

You appear to tick many of the boxes for Lupus. I dropped taking Ibuprofen when I got the CKD.

On the brighter side: Once I got my Lupus diagnosis (by a fantastic Rheumatologist) I was given the medication and almost immediately I started to feel so much more like my old self. I get to the gym at least three times a week and I walk every day.

My advice - exercise daily at a comfortable level (if your doctor agrees) and push to get a final diagnosis asap.

Good luck, at your age you'll soon get back on track!

[Flimsypickle in reply to bofishandchips]

Hi,Thank you for sharing your story—it's reassuring and motivating to hear how well you've responded to treatment after your diagnosis. Your symptoms sound very similar to mine, particularly regarding joint issues in the hands and wrists. It’s interesting about your CKD, as I've had unexplained symptoms myself, so I'll raise this with my doctors too.

Your advice about daily exercise resonates with me; I've found regular gym sessions really help manage symptoms, but pushing to hard really wrecks me for weeks! I'll keep pushing for a definitive diagnosis.

I really appreciate your positivity and encouragement—it gives me hope that I'll get back on track soon. Thanks again, and all the best to you!

[bofishandchips in reply to Flimsypickle]

Hi,

I abbreviated on my symptoms. At my worst stage I had excruciating shoulder pains in both. Also in my elbows, knee (x1) and occasionally an ankle or two. I developed a Pulmonary Emboli (PE), bilateral which in itself gave pain. And other bits and pieces. However, with all that said, try not to let it get you down (easy to say) because there is a solution and it comes, as I said, with a diagnosis and medication.

Good luck, keep up the gym and stay positive.👍

[AnonLupi]

Hello I definitely agree with the factor 50 sunscreen advice! I wear it everyday, twice a day, without fail and it has helped a lot! My butterfly rash beams out after being outside. Look for a high uv rating - it need not be expensive, lidl do a great sensitive skin factor 50 for under £5.

I also treated myself to a cool stetson hat with a brim to give my face some shade. I keep covered too. It sucks but it helps and after a while it becomes second nature.

I was advised not to take ibuprofen. I hope you get some answers soon.

Best wishes

[Flimsypickle in reply to AnonLupi]

Hi,Thanks so much for the tips! I’ve just bought some factor 50 and will definitely make it part of my daily routine. Good to know about the Lidl option—I'll check that out next time! Love the idea of a stetson too; sounds stylish and practical.

I've stopped taking ibuprofen now after everyone's advice. Really appreciate your kind words and support. Hopefully, I'll get some answers soon!

Best wishes to you too!

[AnonLupi in reply to Flimsypickle]

The added bonus of the sunscreen? I've lost quite a deep wrinkle 🤣 every cloud and all that!

Wishing you the best!

[Tykle]

It is common to have several autoimmune diseases together, which can complicate things. Like others have said, sun block is essential as sunlight can trigger multiple symptoms. If you also suffer from gastro issues, especially carbs, has coeliac disease been considered? Good luck with diagnosis.

[Flimsypickle in reply to Tykle]

Thanks for your message—I really appreciate it! I’ve actually been tested for coeliac disease, and it came back negative, although carbs do seem to trigger symptoms. I'm now looking at other possible connections. I'm also definitely taking everyone's advice on sunblock seriously. Thanks again for your support and good wishes!

[OldTed60]

Hi. I was looking at your photo and, although I have Systemic Sclerosis and Sjogren’s plus hypothyroidism rather than Lupus, I somehow thought of Dermatomyositis because your eyelids look affected too? When all this started many years ago I had a facial rash similar to yours. I was misdiagnosed with seronegative RA/ inflammatory arthritis for about 4 years. The rash was diagnosed initially as allergic, then as Rosacea - now it’s known to be part of my systemic sclerosis but it no longer looks like yours and is permanent along with hyperpigmentation.

Looking back I’m fairly sure that the inflammatory arthritis and rashes were Dermatomyositis but no one ever tested or even considered this apart from a dermatologist some years on. Now I have a rare antibody for systemic sclerosis but also pointing to secondary Myositis and so my rheumatologist agrees that my rashes and bilateral muscle and joint pain might well have been this rather than RA and allergies.

[Flimsypickle in reply to OldTed60]

Thank you so much for sharing your experience and insight—it's incredibly helpful. Dermatomyositis has come up before, especially due to my eyelids and facial rash, so your story really resonates with me. I'm sorry it took so long for you to receive accurate answers; that must've been frustrating.

Given your experience, I'll definitely push my doctors to consider Dermatomyositis or related conditions more seriously. It's reassuring to hear that eventually you got clarity about your diagnosis.

I appreciate your support and advice—I hope you're managing well with your current treatments. Thanks again for reaching out!

[Dottie11 in reply to Flimsypickle]

I agree with old Ted push for Dermatomyositis too. Can be confused with Lupus and Psoriasis. Good luck.

[OldTed60 in reply to Dottie11]

Also more likely with negative ANA and ENA than Lupus x

[Flimsypickle in reply to OldTed60]

Thank you all so much for your helpful suggestions and insights—I truly appreciate the support. I'm attaching another photo this is how the rash presented the first time before the original picture I posted

Malar rash

[OldTed60 in reply to Flimsypickle]

I can’t comment more on this photo as I’m not a dr but I think, focusing on broader symptoms and your young age - you are remarkably well informed and level headed so I’m hopefully that you and your rheumatologist will get there in the end 🤞🏻😊

[Flimsypickle]

Quick Update: After a rough few days of severe flare-ups (butterfly rash, intense joint pain, chest discomfort, and exhaustion), I decided to go to A&E today to try to get some clearer answers. Multiple doctors have previously mentioned lupus, but my blood tests have always come back normal, causing confusion and delays in diagnosis.

Today, I’m determined to advocate strongly for myself—I'm asking specifically about a skin biopsy, additional antibody tests, and investigations into possible overlaps like Dermatomyositis or Urticarial Vasculitis Syndrome.

Thank you to everyone who's supported me here. Your experiences and advice have truly helped me feel less alone, and I'm hopeful I'll finally start getting some clarity. I'll keep you all updated on how it goes.

Take care everyone!

Ashley