Hi,
This is my 1st time here, I haven’t yet got a diagnosis but my GP is certain I have SLE.
My Malar rash appears almost everyday I seem to get to around lunch time each day and my face will flare.
How often does your malar rash show as I thought it only happened when you have a flare up?
TYIA
Hi Decoupage19 ,
Welcome to the LUPUS UK Community Forum. I hope that you'll find this a helpful place for information and support.
Has your GP referred you to a hospital specialist for further investigations and treatment of your suspected lupus?
Have you identified anything that may be triggering your malar rash? Exposure to UV light, stress and tiredness can all cause this.
If you'd like to learn more about skin involvement in lupus we have a booklet which you can read and download at lupusuk.org.uk/wp-content/u...
Also, if you'd like more information about lupus and LUPUS UK, we have a free pack which you can request or download from our website at lupusuk.org.uk/request-info...
Hi Paul, yes my GP has referred me to a rheumatolgist. I have been receiving treatment for over 10 years for Chronic Fatigue Syndrome, Migraines, Fibro and many other stress related problems because I have been my daughters carer for over 18 years as she has Downs Syndrome, autism, endometreosis, IBD, Heart problems, phychosis etc etc and its only now I have kept a video file of my symptoms and suddenly when my GP saw my face he immediately said he disagrees with all my other diagnosis and has now made the referral but its gotten to a stage where my husband has now got to care for me and also my daughter and I cannot even get through a day without my face flaring several times a day which is just like hitting a brick wall and I then have to go back to bed and rest until I can at least get up again and move around. I don't leave our house, I can't do anything at home at all, its gotten to a point when in all honesty I question why I'm here as it's not life, its just existing, but what for, I cannot keep fighting and the same will happen to my husband as he is now trying to juggle being self employed caring for me and our daughter and in addition we have another child with autism who refuses to accept his diagnosis which is challenging to say the least. Sorry for my rant just feel completely isolated, no help available at all. Cheers Sharron
Hi Decoupage19 ,
It sounds like you are experiencing a lot of stress and need some additional support. I'm glad to hear that you've got a referral to rheumatology. Have you got a date for an appointment yet? Have you also spoken with your GP about the stress and low mood you've been experiencing? They may be able to offer some additional support such as treatment or referral for counselling.
Are you able to get any more assistance at home? Are you currently receiving all of the welfare support that you should be eligible for?
Please continue to post in this forum as we have a lovely, supportive community here. If you'd also find it helpful to chat to one of our trained volunteer telephone contacts, please let me know and I can provide you with more information about this service.
Hi Decoupage 💐
A very warm welcome to this fabulous forum!! Here u will find out about all things autoimmune!!
U R not alone!! There r loads of us!!
I'm glad that u have taken photos of skin to show rheumatologist..it's helpful to keep a diary of your symptoms too so that u can get the most out of your appointment.
It certainly does sound that u have a lot on your plate caring for your children n I'm sorry to hear that you're unable to do much at the moment..but it's important that u don't get too stressed at this time coz you'll just make yourself more ill. Stress drives lupus!!
Hopefully when u see the rheumy u will be thoroughly investigated..lupus is usually diagnosed through symptoms experienced n a blood test. I take it that you're not on any meds currently..but I do want to assure u that when u have been diagnosed things will start to get more manageable with the right medication!!
I can't really help with your Malar rash question coz although I have skin rashes all over my body I haven't had it on my face..but it sounds as if u r having a flare..which could also account for your fatigue n weakness n yes all u can do is rest at these times!! I'm glad that u have your hubby to support u n hopefully once u r feeling a little bit better u can do more..but for now you've got to rest n try not to get too stressed n frustrated..easier said than done I know..but it's important!!
Hang on in there 🤗
Kat xx
Hi Kat, thank you so so much for your reply, its nice to know I'm not alone I was starting to fell like my doctor totally doesn't believe my problems. x x x
You're welcome 🤗
Where your at currently is in a place we lupies tend to call the 'diagnostic wilderness'..I think it's a wonderful description of knowing that there's something really wrong with your body n the docs not knowing what to do!! It's soooo frustrating!! N extremely worrying 😔
But on the positive side u r going to see a specialist in the near future who hopefully will be able to help!!
While your unable to do much I would definitely recommend u have a look at lupusuk website..it's so informative!!
N of course..any questions..post on here n u will get good advice n support from us who know exactly what you're talking about!! Xx
Hi. Mine appears everytime I drive my car around noon time in a sunny day or when I spend more than 2 minutes under the sun. I try to avoid that.
Also when I am very very upset/emotional /stressed/ angry /tired at work /after many hours under some lights /under bright lights like stores or hospitals.
It comes and goes and it seems like a blush or heavy make up.
I guess it disappears because I am taking medication and well under control ... during a flare the rash can be constamt and won't go away.
Try to notice what triggers you so you can manage it and the energy you have. It seems that you have a lot of stress in your life... don't burden yourself with everything in 1 day.
We are all differents. I hope your Dr can soon make a diagnosis and find the medical treatment you need to feel healthy. Malar rash is 1 of 11 common symptoms of Lupus, but there are other criteria.
Paul already suggested good info for you to read.
Wishing you well!
Samantha
Trying to understand malar rash and photosensitivity.
Malar Rash
Malar rash caused by heat?
Malar rash skincare
