This is my first post. I'm yet to be diagnosed. I'm on a waiting list to be seen by a rheumatologist, unfortunately the waiting list is over a year long. I however, strongly suspect that I have lupus.
For this post, I basically wanted opinions and thoughts as to malar rash. I get the characteristic butterfly rash fairly often, sometimes it itches and when it's quite severe it feels like my face is on fire. Does this normally happen with malar rash?
I've also attached a cropped picture of my latest episode, do you think this looks like it could be malar rash?
Thank you for the support!
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Retsuko
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Hello Retsuko. Yes it looks like it could be a malar rash. It also looks like rosacea. Do you have other symptoms? We can not diagnose you based on facial rash. Unfortunately we can not diagnose you at all. 🤷♀️ We can help you and support you if this indeed is lupus. For the record my malar rash is very similar and burns. I have aloe gel in my refrigerator that I slap on and eventually my skin stops itching and burning.
I have a tonne of other symptoms that I've struggled with for a few years now, it's really difficult without diagnosis or treatment.I have looked into rosacea, but it doesn't really match up. It doesn't sting when using water or face products, it just stings constantly when the rash is flared up. It feels like my face is burning. It also isn't brought on by anything such as spicy food, caffeine or hot drinks. I also don't have any of the other symptoms of rosacea detailed on the NHS website. The rash doesn't always appear when I've been outside, but it occurs more when I've been out during the day.
My symptoms over the past few years have been:
● Widespread joint pain with high inflammatory markers
● Debilitating fatigue, sometimes worse than others
● Mouth and tongue ulcers that come and go
● Dry, itcy eyes
● I've been diagnosed with Postural Orthostatic Tachycardia Syndrome
● Frequent recurring infections
● Intermittent rashes when out in the sun/ itchy skin
● Chest pain
● Frequent migraines
● Really bad circulation
● Numbness, tingling in parts of my body
●Joint stiffness
● I get fevers when my symptoms are particularly bad
Yes, I understand nobody can diagnose me on a forum. I just feel like doctors never take me seriously and I feel like I'm going insane
The aloe gel is a great idea, I think I will get some!
Reading your list of symptoms, I realize you could be me forty years ago only my internist did take the fevers, fatigue and mildly ESR seriously. Took a long time to diagnosis, though. Like you, I my ANA was negative until a trip to the Caribbean. I don’t advise it.
I have exactly the same rash & symptoms as you describe. I was diagnosed with SLE Lupus in June 2022 by a Consultant Rheumatologist.
People stare/ask questions/assume I’m having a menopausal hot flush which I’m definitely not as had cut open, Total Abdominal Hysterectomy 14 years ago, due to gynae Sarcoma.
I avoid going out, however since the introduction of facemasks they hide my face but are detrimental in that they exacerbate the rash!
Green foundation under skin coloured cover stick & foundation tones down the red, but I hate wearing makeup & only do so very occasionally.
I created an Album of photos to show Rheumatology Dr/Nurse as it varies along with other skin lesions etc.
I feel for you, it’s the bane of my life & gets me down….
Yes, I feel the same. I avoid leaving the house, fortunately I do not have the rash constantly, but I never know when It's going to come back. It has been quite frequent at the moment. I'm sorry to hear about your hysterectomy.
Yes, I have been collecting pictures of my rash for rheumatologist. I actually saw a rheumatologist in February, but she was awful, made me cry and refused to even look at my pictures. She took one look at me and essentially said it was Fibromyalgia. My GP and I decided a second opinion was best so I'm on a waiting list for a hospital with a better rheumatology department.
It's incredibly hard, especially with no support or diagnosis
Thank you so much for your response, it honestly means the world to chat to people who understand ❤️
sending you a hug as I know , as a lot of us do on here some rheumys can be cold 🥶 and totally lacking in sympathy😡 . It’s such a hard road to be on but there’s such lovely people on here you will get there . Keep taking pics , keep writing notes . Ask for copies of all blood tests so you can compare in future . Simple blood tests can be ordered on line and can help with your overall health. You can do them at home . I check my b12 and D3 and also iron . Often they do discounts but aren’t overly expensive . Just helps you to feel bit more in control sometimes if that makes sense . 😘
Ps I’ve never had positive Ana but was eventually treated because symptoms and low white cell count
Retsuko - that is a striking rash. It is impossible for us to diagnose but we can share our similarities. The one time I was thought to have the malar rash it was similar. I have rosacea so my sun sensitivity rosacea rash can look similar. Your rash is also on the nose and not around the side areas it appears. Are you having symptoms at the same time as the rash? Any comments from GP?
Nine months is a long time to wait. What are your symptoms and lab tests so far? It may make sense to try to see a dermatologist privately if you can get there when your rash is present. They could probably diagnose that rash, particularly if they could see in person or at least on video session.
Best of luck. I know it is a frustratingly difficult and slow match to diagnosis.
Yes, I understand it's impossible to diagnose on a forum. I just feel like I'm going insane and that my doctors aren't paying attention.
Symptoms I had at the same time as the rash last night were incredibly dry itchy eyes, a headache, bad circulation (fingers and toes going purple/white) and joint pain along with the stinging and burning of the rash.
My GP has no idea, I saw a rheumatologist in Feb this year but she refused to look at pictures of my rash and essentially took one look at me and said it was fibromyalgia. I've since been referred to a hospital with a better rheumatology department, but the waiting list is over a year long I was told.
I've had my blood taken multiple times, I constantly have high inflammation levels and some other issues I can't remember fully now. I did test negative on my one and only ANA, but I do believe it's still possible to have Lupus regardless. I have attached a list of my main symptoms to my earlier reply to MrsMarigold on this post if you'd care to take a look.
I will definitely consider that, thank you very much! xx
You have really hard a rough time. Some of your symptoms do not sound like fibromyalgia. Will tell you what I hear that you need to make clear to doctors: joint pain and stiffness and take photos of any swelling, fevers and record them daily with corresponding symptoms, dry eyes which should be seen by optometrist and documentation should be taken to consultant if exam is consistent with Sjogren’s. What inflammation markers were high? You mentioned other blood tests. They all could be significant - any anemia, low white count etc.
You may be in early stages of autoimmune disease. Did the first rheumatologist know you had fevers? How about the high inflammation level? Was that ESR?
I won't lie, it is incredibly tough. I was taking so many anti inflammatory medication to get by that I ended up with a suspected stomach ulcer. Myself and my doctor agreed that it didn't really sound like fibromyalgia, hence why I'm going to a different rheumatologist.
Yes, I will definitely make sure to record more things like that! I may try to keep a symptom diary as well.
I believe my highest was my CRP, my ESR was also abnormal but the ESR on my last blood test had come down slightly while my CRP were even higher. I wasn't anemic last time my bloody were checked, but this was a while ago since my bloods were last checked since I'm waiting to see the rheumatology.
Yes, she was aware. Or at least I told her, she didn't seem too happy to listen though. It seemed to me like she had already made up her mind, she had all my blood results also!
Hi Retsuko. Thx for your excellent detailed list of Symptoms. On this forum are many like you who just are waiting for a diagnosis. Here in the States hydroxychloroquine is prescribed for fibromyalgia. If you were to accept that diagnosis for now, would you be Prescribed this? It is the first medication given to lupus patients. If it makes you feel any better I had same experience with a Doctor of Rheumatology who denied all evidence given to her based on the fact that I had no major organ involvement. Hello! The skin and blood vessels count as organs with lupus. Hope you find some comforts here
I have the same symptoms as you I've been like this now for over 10 years I did see a doctor and had blood tests but it's very difficult to detect. I hope your appointment goes well
Sorry it is taking so long for you to be seen I eventually went privately I had similar symptoms to what you have minus the Malar rash but rash elsewhere when exposed to the sun I was initially diagnosed with Undifferentiated connective tissue disease lab results initially showed negative ANA however lab results recently have showed ANA positive and positive crithidia the diagnosis now being suggested is mixed connective disease likely Lupus. It has taken nearly 7 years it can be a long road to reach a diagnosis hang on in there x
Thank you so much for your words of encouragement, it really is hard. I feel so alone and on my own, I'm in so much pain and there's no treatment because of not having a diagnosis. How did it work when you went private if you don't mind me asking, please?
Not at all I went privately due to the long wait to be seen by someone on the NHS I paid £180 for a consultation with a Rheumatologist who indicated that she thought it was most likely Lupus but the criteria for diagnosing I didn't have all the markers so she suggested Hydroxychloroquine but I declined until my eye consultant confirmed it would not affect my sight as I have Glaucoma and already I have lost some vision. Since the consult my NHS appointment has taken place and Blood lab tests came back positive for ANA and Crithidia as well as DS double stranded so again I have been offered Hydroxychloroquine which I am not about to start taking. I found that It was worth consulting a Rheumatologist who specialises or has a keen interest in Lupus who can run some bloods to hopefully obtain a clearer picture and advise with a possible view to offering treatment/medication to help with the symptoms you are experiencing.
Hi-I’m so sorry you’re having to wait a year for your appointment! That’s crazy! And yes; this absolutely looks just like my malar rashes. Curious how sun affects you. Are you photosensitive?
It is insane, I've waited for 5 months so far and they're estimating I'll be seen in May! Thank you so much for your message! I get insanely tired in the sun and get Intermittent blotchy and itchy skin
Hi Retsuko - Keep plugging away and you will get there in the end. I now have a diagnosis of Lupus, but it took 4 years to get it. This, despite the fact that I had each and every symptom you list in your initial post, plus neutropenia, low C3 and C4 and chronic oral thrush and low iron. My problem was that my ANA was normal to begin with and all of the doubters kept stressing that I could not possibly have lupus since my ANA was normal. Eventually, my ANA levels did become abnormal, and even then, my GP and the rheumatologist still tried to deny that I had lupus. I'm sure I'm far from alone in saying that sometimes when you are in this position you feel as though you are living in a parallel universe - where those who should be providing you with care are determined not to. Sometimes when you are trying to get a diagnosis, you really feels as though you are fighting a losing battle. It is very stressful and distressing and I feel for you. The one good thing about getting a diagnosis is that health care workers - doctors and nurses included) have to behave with a little decorum and treat you with a little respect, instead of disdain. Before I got the diagnosis, I had begun to steel myself before attending for medical appointments of any kind. It was simply horrible. Keep going and you will get there in the end. Good luck.
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xx
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