I am not diagnosed with Lupus, but I do have Ehlers Danlos Syndrome and Generalised multi joint Osteoarthritis, fibromyalgia and am hypothyroid.However, I am trying to get to the bottom of the terrible sores that come up on my face and neck. They can be terrible and then clear up a bit, but never fully go away. I have had this since I was a teenaged (some time ago...) but its getting worse as I age.
Dr is currently trying me on antihistamines, which don't seem to be having any real affect.
I have been queried previously for rheumatoid arthritis, but nothing came of that.
I won't bore you with all my others symptoms, but could anyone tell me if this could be lupus?
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Lozza812
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You would really need to see a dermatologist to get a skin biopsy done, I was diagnosed that way but it took 10 years of mysterious illnesses and seeing a rheumatologist. I guess some rashes are different but it doesn’t look like mine I’m afraid. Best wishes x
Sorry see all your going through a dermatologist who's specializes in auto immune conditions would be helpful for you and a biopsy.I have mixture of conditions my butterfly rash looks like butterfly.
Hope you get answers you desire regarding this re occuring rash.
I’ve also been dx’d with EDS, not lupus, as well as several other conditions
I get similar lumpy bumps which easily turn into things similar to yours with very little provocation 😬
I think it goes with allergies (many things in my case) and having delicate EDS skin. Any rubbing of the itchy blighters (caused by allergic reactions 🤷♀️) and then addition of antiseptic cream/ aloe Vera etc etc causes them imho. 😖😖😖
after many years of getting it wrong, I now stick to washing my face and body with goats milk soap, a simple moisturiser and zero make up. This helps but doesn’t entirely resolve the issue.
I can't help you, but I will say, your warning was not warranted. You are not ugly. You have the camera angle at it worst. I can see you do have those spots and I won't lie they are horrible for you but you are not ugly. They will make you self conscious obviously and no one would want them but from your warning I was expecting an old hag, not a normal person with a problem.
I agree with others here you must get biopsy. I had similar bumps but always on my scalp. It was the biopsy of a few of them that sent me to a Rheumatologist for final diagnosis Best Wishes!
You're welcome,and your not ugly my father had discoid lupus he had red patches that would itch scar he wore sunblock big hat.Hope u find answers soon must be quite uncomfortable I'm suffering peeling itchy scalp seborrheic dermatitis waiting on new dermatologist referral
Thank you for posting. No warnings were necessary though!
I'm afraid that we are not medically trained here and cannot advise whether your symptom could be caused by lupus or something else. Skin involvement in lupus can present in a wide variety of ways though, so it may be possible.
Could your doctor refer you to a dermatologist for further investigations? As some other members have suggested, they may wish to consider a biopsy to aid diagnosis. Sometimes in lupus, a skin biopsy may help with diagnosis even if the blood tests don't show signs of the disease.
I hope that you are able to find out the cause soon and get some treatment to help alleviate the symptom.
Please keep us updated with how you are getting on and let us know if you need anything else.
I have lupus, as well as Ehlers-Danlos and I have never had a rash like that from lupus. Have you looked into the sub conditions that go hand in hand with EDS? I am currently having an issue with my skin where I suddenly come up in welts and my skin puffs up and goes bright red like I'm sunburned. It isn't lupus related (that we know). Been Dermatology (who were about as useful as a chocolate teapot) who told me to take 4 Fexofenadine a day (guess what? I was already taking 2 day regardless for it). It doesn't respond to antihistamines but does respond to steroids so I am leaning more towards an immunity issue but Doc is convinced it's histamine based. As others have said, a biopsy SHOULD be able to at least rule things out, even if it can't give you definitive answers. Also, please do not be so hard on yourself, you are NOT ugly 🤗
I have been looking at mcas, but again, it doesn't really fit. And isn't really responding to antihistamines greatly. As I was once told by a doctor,'Iam an enigma'.
Strange that you say that about the sudden swellings/welts. I suddenly broke out in severe hives. Even tho I took a series of steroids (actually before hives breakout ) they didn't help. The only allergy pill that actually worked was Zyrtec and also cornstarch powder!! Then when labs for lupus diagnosis came out I was also diagnosed with 4 major food allergies ! At the age of 69!! Wheat. Soy. Dairy. Eggs. The day after I stopped eating all of those foods the hives and "buzzing" in my body went away. Allergy doctor said I had no allergies. That it was coincidence that hives went away when I stopped eating those foods. I personally think...well I'm not going to say what I think, but I do believe I was having my first major lupus flare which deeply sensitized my body !! Now 7 months later I still take one Zyrtec every morning. Yesterday I had an egg omelot!! I had tomato soup (which had wheat in it!) and also Ritz crackers which is total wheat! After dinner I decided to force the issue and had a real ice cream cone! Guess what? No hives. At all. Did the lupus outbreak cause the major inflammation? I believe yes. However I talked with a nutritionist today and she advised me basically not to "push it" lol. Maybe in another week or two I'll try a slice of pizza or an egg roll. But those will only be occasional treats for the rest of my life. Just out of curiosity, why do you say it's not lupus related? Lupus inflames the body. Anyway. Just something to think about. The hives outbreak was truly horrendous and I thought it would never go away. Thankfully it did. Hopefully you can find answers sooner rather then later.
Mine isn't lupus related. I say that because firstly, my lupus is pretty quiet at the moment, secondly, I have never experienced this before and thirdly, it is more likely to be related to EDS in my case. Obviously I cannot be 100% sure and in all fairness, I don't think the Doctors can be either when it comes to someone who has several conditions. I have no food allergies or intolerances (been tested several times) and I also have a pretty limited diet for medical reasons so I very rarely eat anything out of the ordinary and even when I have, no reactions have happened. I take antihistamines most days for other issues and with the welts, even taking 4 a day does not touch it, but a steroid shot, or a short course of Pred does. I personally believe it's more likely an immune response as I have noticed a slight pattern in some instances but Doc will not send me to immunology.
Thankyou I think 6 years in answers are not going to come but I need a true history account incase of future problems and a bit of acknowledgement after all this time. Self help is probably the best bet for me given the local hospital and healthcare. Best wishes
Sorry you're experiencing this, it's awful isn't it? I have been advised to wear factor 50 sunblock every day on my face and it's worked for me. My skin is now clear. You might be different of course, but maybe worth a shot. Hope it helps 🙏 xxx
I had this antihistamines didnt clear but was better after high dose steroids though still get it on neck and up around ears and scalp. disc shapes on fingers and toes have never gone with antihistamines either but at least you are trying them and hopefully they can rule out with that and try something else. best wishes 🙏
My partner has been on a long ‘journey’ (hate that phrase but couldn’t think of anything more appropriate) through various autoimmune diagnoses, the most recent of which is lupus. He’s currently on 60mg day Presnisolone while waiting to start Rituximab and he has sores / lesions / spots like yours all over his face / scalp / hands / chest. As you describe they are awful for a few days or maybe a week and then clear up a bit for a while and then start up again. Don’t know whether it’s the lupus, the RA, the steroids or something else, but you’re not alone.
agree awful phrase but yes we all use it. So sorry to hear this. Yes it’s six years ongoing , covid left me unseen then crisis next hurdle or excuse and then seems if you have air in your lungs what are you complaining about. I have had many suggestions of what could be from docs but nothing has been diagnosed and now all of a sudden this. I can literally feel myself worsening though the steroids did initially help but just given with no follow up. The steroids were great help for me so am fearful now . I came to this site years ago after twice suspected lupus but no further and furthering problems bringing more it seems confusion. It’s in a way a comfort to know I’m not alone but of no comfort knowing so many of us are left with this to deal with. I sincerely hope your partner gets the help he needs and thank you for your reply 🙏
I add I have no diagnosis so have no idea what I’m dealing with , but know the symptoms which many here relate to with their lupus.it is an awful journey
you know I was just thinking thata whole bunch of different rashes was just a topic in my lupus forum recently. Odd how these autoimmune issues, like rashes, mimic each other ! Having had the horrid hives rash I empathize and sympathize with anyone who has one 😕
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Loss of tissue in face
~ swelling to face, hands, legs and feet. 
Why do I feel so awful all the time?! 
Numb gums and loose teeth feeling! 
