This is my first time on the forums - I’ve hesitated on asking for help as I don’t want to be seen to wanting to be ill, please understand that’s obviously not my motive.
About a two years ago I was diagnosed with Fibromyalgia. It took a lot of back and forth-ing to the doctors, to different GP’s who didn’t believe there was anything wrong with me. It’s been quite rough. I’ve also been diagnosed with hypothyroidism. Anyway, I’ve developed a rash on my face that covers my cheeks and (lightly) goes over my nose. I’ve been tested for Lupus twice now (I technically have symptoms but can be jotted down to Fibro) and both times I have resulted negative. But most every doctor I see they ask me if I have been tested for lupus, so they obviously think this rash looks suspicious.
I feel as if my health has been declining the past year and I can just feel as if something is off. Somethings not right. Just how I felt when I began to present with Fibro. But my GP just seems to think because I’ve tested negatively for Lupus, that’s the end of the line. Is the Lupus blood test just a yes/no? Or is it much like inflammation markers for Rheumy in which if you’re over 100 your GP refers you?
I just wondered if anyone would mind me posting some pictures of the rash to get your opinions on the matter (I don’t want to post immediately in case I’m breaking some kind of forum rule/ people aren’t interested). Some of you may be able to recognise it as something you’re suffering with. I know this won’t be a diagnosis, and I know my GP is probably right. I think where I had to fight so hard for my other diagnosis’ it has made me unsure of myself and my doctors. And I am a firm believer that the people dealing with autoimmune diseases (which are so tailored to each individual patient) know a lot more than a textbook.
Thanks in advance my dears and I hope you’re having a splendid evening!
Edit: added a photo, only just realised it can only be one! I’ll try to pick the best one! It hasn’t been edited apart from being cropped to try and hide my face (you’d have such a fright 😂). Anyway, it does vary greatly. This one is more bright pink and others it has a reddish tint. I also have spots which arent actually spots - it’s not infected. I literally leave them and after many weeks they go away, but they’re almost dry and crusty toward the end and I have only been getting them since the rash. I can try to post another thread with that in if it’s of any interest. Please let me know what you think? Thanks lovelies.
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Peppytea
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Hello, i can only say my diagnosis took about 5-6 years of fighting with the doctors.but lucky enough one consultant put me on plaqunil even though i had negative test results. And i tested positive after being 3 years on this medicine. Your current diognosis can be resut of the Lupus, or overlaps with Lupus. Please remember, Lupus can take years to diagnose. Dont give up and look after yourself. Eat fresh and healthy. Keep discussing your concerns with the doctor.check Vitamin D levels as lupus patients lack Vitamin D. I had no D in my body.. i wish you best! L
Hey there LalSD, I hope you’re having a lovely Sunday!
Thanks so so much for the reply, it made me feel quite sad to hear it took you so long to get your diagnosis - I’m sorry. I’m afraid I’m a bit of a beginner on the whole Lupus medication: do you mind explaining what Plaqunil is?
I honestly didn’t know that it could take so long to be diagnosed so I really appreciate the information. I honestly do believe I have a chance that I am suffering from this (autoimmune diseases run in the family) so I now know to keep fighting for me right to be diagnosed and to not give up on myself (which, honestly, I have been).
Odd you should say about Vit D because last year when these things arose I tested negative for Lupus but I was anemic and lacked Vit D so that was definitely good for thought!
Will be posting photos shortly of the rash if you don’t mind popping in your thoughts?
Hello Peppytea: i’ve been here on this wonderful forum for 7 years. During that time many people have posted photos of rashes and i have never noticed anyone being told they shouldn’t (well, so long as the rashes aren’t in intimate regions). So please do post a photo.
I think lalSD’s reply is great!
Here is a link to info about diagnosis on the Lupus UK website...a great video is featured:
Hey Barnclown, I hope you’re having ana amazing morning!
Thanks so much for the useful information you have posted here - I will definitely be having a wee read through tonight. Knowledge is power, after all!
Also thank you for the encouragement of posting a photograph - I will be doing so shortly if you don’t mind popping in what you think?
Thanks again and I hope you’re having a beautiful Sunday x
The malar rash of lupus is red or purplish and mildly scaly. ... Notably, the rash spares the nasolabial folds of the face, which contributes to its characteristic appearance. It is usually macular with sharp edges and not itchy. The rash can be transient or progressive with involvement of other parts of the facial skin.
Malar rash - Wikipedia
Of course it’s hard to actually see the consistency/texture etc you’ve described of this rash, but your rash does not seem to spread over your nasolabial folds (those laugh lines between ends of mouth & edges of nostrils), so am glad you’re showing this to your medics.
My malar rash affects my nose as well, and i’ve had progressive involvement below the mouth, which, years ago before my luous was figured out, a NHS dermy incorrectly diagnosed as perioral dermatitis...of course actually my version this rash didn’t respond positively to topical meds for dermatitis...but it does resond pos to my lupus meds
Do keep taking photos of all visible signs & symptoms on your bod...collect them together & take them to medic appts etc
PS this official USA website does a pretty good job of giving solid info re official diagnostic criteria and explains lupus-like overlapping conditions:
Thanks so much for this lengthy reply Barnclown - there’s so much to learn!
I will definitely have a good read through the links you have sent me. How long have you been diagnosed with Lupus and how long did it take?
Thanks for your thoughts on the rash - can I just clarify that it is good or bad that it doesn’t go over the nasolabial folds? And would you say the rash seems similar to someone who is suffering from Lupus? (Like you said, I know you can’t see the texture or anything... if you saw this pic on google would you think it was Lupus?)
Thanks so much my dear I really appreciate your input x
Yes: when examinng malar rash doctors are more likely to suspect possible lupus when the rash does not spread over the nasolabial folds (inwards towards cente of face between nose & lips)
I tend to be cautious because i am not qualified to “express a view” on whether your photo shows lupus rash. All we can responsibly say is that i do think it’s worth showing this rash/pictures to a doctor expert in lupus & lupus-like conditions (UCTD, MCTD etc) and if you decide to do this, i’d urge you to be ready at least he sam3 time to present the doctor with a listing of your persistent & recurring multisystem signs & symptoms (as per the advice on the LUK website & that USA website).
My HealthUnlocked profile gives you most all m6 background info inc when my lupus was diagnosed (mine is infant onset). I am 64.
Thanks Barnclown - I do completely understand as you’re not qualified that you aren’t able to determine my health condition. But I really do appreciate your 2 cents on the subject and I will definitely be taking your advice!
Thank you for making me so welcome here - it’s scary sometimes to reach out so it’s been wonderful to be myself and ask questions I would normally keep to myself.
I hope you have a wonderful day and hopefully we will catch up soon x
Peppytea, plaqunil is a simple medicine which works as a imminue supressent! It is widely used to prevent Malaria. Because it is not a complicated medicine, and there are no major side effects but saves lives of lupus patients, my consultant decided to try if I react to it and i never looked back. I used to get Vit D shots and i started feeling better gradually where I can hold a job, manage occational late night due to family commitments. Before i could not do any of these. I also use probiotic to improve my guts, which I strongly believe it is the cause of Lupus. My daughter has Lupus-related illness too. I have been searching long and trying to understand it. I started having beef juice, no fat once or twice and eating well, veggies fruit?Kefir as a probiotic. I take 400mg plaqunil/ malaria tablets to supress my immune ststem. I get tired, i have pain but much less than before. And to be honest, there is no blood test they can offer and say you have or dont have lupus. If you fit quite few of the systoms (12 i think) agreed by medical authorities in the UK and you have positive ANA, they say you have connective tissue disease which is pre lupus. But whatever you do, eat well and sleep at least 9-10 hours a day. Having a regular timetable which i followed and requested my frends to understand is very important. Please get prescription Vitamin D tablets, over the counter tablets are waste of money and are not as effective in my opinion.
Hope this helps and keep positive please. Much love to you, L
Wow, what an awesome amount of information you’ve given em to digest LalSD, thanks so much!
It sounds as if Plaqunil has saved you’re life and I’m so glad for you. It may be something I can suggest to my doctor in the future for testing. My Mum is on Hydroxychloroquin which sounds quite like it.
I will definitely keep everything you have said in mind and will mention to my GP the things you have taught me here. Stay well and take care of yourself my dear x
Fibromyalgia can be commonly diagnosed during early stages of lupus. There are specific tests and criteria that need to be met in order to make a diagnosis of lupus, to find out what they are, please click here: lupusuk.org.uk/getting-diag...
According to The Lupus Encyclopedia, a malar rash is usually a pink or redish-coloured rash which mainly occurs on the cheeks and the bridge of the nose. A malar rash is generally not permanent; it often appears when disease activity is higher or when exposed to certain triggers such as UV light. We are not medically trained here therefore, we cannot state what the cause of your symptoms may be. However, your picture does indicate a 'malar rash'. Have you thought about asking for a referral to a dermatologist? We published a booklet on lupus and the skin which I hope will be of help to you: lupusuk.org.uk/wp-content/u...
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