Good morning, the Dr thinks I have cutaneous Lupus, my symptoms are butterfly rash on the face,
Both the back on my hands are very red and my bottom lip is so sore with sores over them.
He has referred me to a dermatologist but I’m a little confused as a few weeks ago I developed something called TMJ which is where your jaw in inflamed and it clicks every time you try to eat or yawn
He said this might or might not be connected to Lupus ?
If it was connected should I still be seeing a dermatologist as the jaw is a joint ?
Thank you
Sarah
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Sarahb_70
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Hi Sarah 🤗Welcome to the community!! 💐It is right that your doctor has referred you to dermatology with the rashes that you've got. When u see the dermy u can mention the jaw pain that you're having too but chances are the dermy will refer u on to a rheumatologist at some point. That's what happened to me anyway.
I was diagnosed with Subacute Cutaneous Lupus (SCLE) in 2017 n it's the dermy who's in charge of my treatment plan but I do see a rheumy too after dermatology referred me. Unfortunately with lupus there are many bits of us that can be affected n we do tend to see different doctors for different bits!! The dermy will still do more in-depth blood tests might take a skin biopsy of your rashes.
Keep a diary of your symptoms n take pics of your rashes. In the diary note everything even if u think it's irrelevant..things to record..what you've eaten..what's the weather like..physical symptoms..how u are generally including mood. This tool will help u to discover what kind of things make your symptoms worse or slightly better.
Lots of us are very sensitive to UV rays..not just sunshine but indoor lighting too..I'm affected badly by flourescent lighting as an example. Does your rash get worse when you've been in the sun? We're advised to wear factor 50+ sunscreen all year round..cover up..long sleeves n trousers..I have to wear gloves too to protect my hands..wide brimmed hat..n sunglasses!! 🤠😎Also if u are affected the sun's rays are at their strongest between 10am n 4pm so it's best to avoid going out at these times.
If u look on lupus UK website you'll find all sorts of reliable info..n if u scroll down to Eclipse you'll discover more about photosensitivity. You've come to the right place here..I've learnt more about lupus here than from any of my doctor's.. we're a very informative, supportive group n we'll help u along the rocky road. You're not alone!! 💜🌈😽😽Xx
Hi, thank you so much for your reply, Im finding all this very difficult to deal with and so frightened of what’s going to happen.
I’ve been going to the Drs every week for 3 months now the back of my hands are red and a couple of times a day they don’t swell up but throb and you can feel heat come off of them.
My lips are covered in sores and the drs kept saying it’s dermatitis
Sunday morning I was sat in bed sobbing because nothing they were giving me was working and it’s been going on for so long
I decided to go to the hospital on Sunday and the dr there looked at me and said you have a butterfly rash on your face so you know what lupus is ?
With that on Monday morning I was at my own Drs who prescribed me prednisone for 2 weeks and he got a nurse to give me a blood test straight away
This worries me as at my Drs you have to wait 2 weeks for a blood test
Can I ask you is Lupus like you could have a flare up and then it’s treated and then you might not have one for a few years or you could have one next month ?
Also I have read that people who have Lupus lose their hair, eye brows and eye lashes.
Has this happened to you or anyone you know ?
Sorry for all the questions but I’ve been told it might be months before I see a specialist and I’m worrying myself sick not knowing anything xx
Never say sorry for asking questions hun..the more u ask the more you'll know!! We have to learn everything there is to learn about it coz some docs don't have a clue!! 😹I've still got my hair n my eyebrows n my moustache!! My lashes have thinned but I'm post menopause now n that happens anyway at that time of life. My legs n underarm hair is less too!!
You'll discover over time that although we all have lupus we differ in symptoms..they say no two lupies are exactly the same!! Each of us are unique.
Did u have loads of blood taken? Usually there's quite a few bottles needed. Is the Pred helping you at all? What are u..second day now? You might find that it may take another day or so.
Sobbing...oh yes lovely I know it well..it's good to have a cry though..better out than in!!
When I was undiagnosed I felt like 💩for most of the time. On average it takes six years to get a diagnosis of lupus..in my case it was about seven? Can't remember now!!
Even after diagnosis it took two years for us to find the right combination of drugs so I was still ill n breaking out in rashes/flaring more or less constantly!! Now however I'm on the right combination of meds n I manage much better. With lupus there is no cure...no quick fixes..you will have to adjust your life..but that's not to say u can't have a good life. I think everyone of us has had to grieve..it's part of the process.
You have so many questions n it will take lots of patience in order to work out what works for u n what doesn't. This is why it's fab to be around friends who 'get it'..we understand what it's like living with this condition 24/7. It's hard for me to say how it's going to go for u but I would say..stick with us..treat yourself gently ok..get plenty of rest..keep reading here you'll find out all sorts..n pretty soon you'll have some ideas about the way forward for u 💜🌈😽😽xx
Oh, Sarah, no wonder you are distressed. You are having some troubling symptoms and going through all the work up. You can’t possible understand what is happening.
Right now they don’t have definite answers but they see a distinctive rash on your face. The dermatologist will shed light on that. Your blood tests will give them a better idea of your illness.
How do you feel now? Are you fatigued or having achy joints or muscles? I wonder if the doctor was saying your TMJ could be inflammation in your joint.
When you say your hands are throbbing, do you mean the rash is painful or your joints are hurting? Is the prednisone helping?
We are here to help. Trust that your doctors are doing everything to get a handle on your illness and come up with a treatment plan.
This is all good news. If your lupus is confined to the skin, that is better, though it can be difficult to treat.
Day two is too early to tell, I think. I am just going by how long it takes for me to feel better. Everyone is going to be different too. I bet within a few days your rash will tone down. There are lots of drugs they can use.
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subacute cutaneous lupus
Lupus or not lupus?... That is the question...
lupus?
