New to lupus - bad facial rash

[Lynderland]

About 7 weeks ago I started with a small patch of rash on my cheek, since then it's spread over my entire face. It's not the butterfly. I also started to experience knee pain. My ana levels were high. The GP thinks it's Lupus. Just made a rheumy appt. for July 9th. Takes 3 months to get an appt. I'm so bummed Don't know what to do about the rash. It is itchy and burns and keeps me awake at night. My face is swollen too.

[Wenwen]

May be a hydrocortisone cream will help the rashes. I used the OTC version

[Belindazz]

I was diagnosed with SLE eleven years ago and have suffered from facial rashes especially round nose and chin since my twenties (now 69). Been given everything under the sun for them. Try to avoid using hydrocortisone creams as when you stop them the rash can come back worse. I am currently using Metronidazole a rosacea cream which is slowly dampening down a complete mess on my lower face. I slather on Dermablend concealer before I go out. Good luck!

[Sarah74]

Hello

I don’t understand why you would have to wait 3 months to see someone? Are you an assertive person? Because firstly I wouldn’t be putting up with this wait time if I had a bad rash.

I’ve had bad facial rashes throughout my time with lupus you don’t have to live with it there are a variety of creams, cortisone being one.

Antibiotics also get rid of mine.

Good luck

[Belindazz in reply to Sarah74]

Can you please tell me which antibiotic you were given for your rash - oxytetracycline worked on mine before Lupus diagnosis but now no one will allow me to take it.

Many Thanks

[Sarah74 in reply to Belindazz]

Amoxicillin

[Belindazz in reply to Sarah74]

Thank you!

[VeeWat in reply to Belindazz]

Why won’t they let you take tetracycline?

[Lisas_tired in reply to Sarah74]

Unfortunately my wait time to see a rheumatologist is 38 weeks & that is our system here!! Unless we go private (which I will be) as long as we get a referral from our GP 1st... I have been having symptoms since December & seeing a doctor again on the morning so will be insisting being out on a more urgent wait list & private if nothing is done soon....

[Sarah74 in reply to Lisas_tired]

Oh my goodness

Where do you live?

[Lisas_tired in reply to Sarah74]

Wales, Cardiff... I just found when i rang them Friday...I’ve been on the list 6 weeks so was just enquiring.... I nearly fell over when she said 38 weeks 😳😳 hence I will look into phoning Friday. Where abouts are you?? Xx

[Sarah74 in reply to Lisas_tired]

That just seems an awful long time!

I’m just south of Newcastle upon Tyne. I was diagnosed at 18 and have my consultants email so if I need anything I just email her and she’ll see me straight away. Their door has always been open for me..

[Lisas_tired in reply to Sarah74]

It’s ridiculous & baring in mind, I had blood work done in December and I couldn’t get an appointment for the doctor to explain my results until February & then she told me she was to email Rheumatoid to ask them to put me on their list ....why she didn’t do this when she had my results in December is puzzling to me!!!

Only when I rang hospital Friday regarding waiting time she told me I was put on the list Feb 23rd 🤦🏼‍♀️🤦🏼‍♀️🤦🏼‍♀️🤦🏼‍♀️🤦🏼‍♀️ that’s great you have an email direct :))) This is something I want at my doctors as I’ve dealt with 4 doctors in 3 wks regarding another issue & of course they all have a different opinion & I was put on 2 different antibiotics & 2 types of medication!!!! I’m at my wits end!!!!

[Lynderland in reply to Sarah74]

I'm in the US. Not to far from New York. In Reno, Nevada it takes 6-12 months to see a rhuemy!

[Wildcats85 in reply to Lynderland]

Wow, I am in Indiana and it takes 2-3 months

[leslieliesel in reply to Lynderland]

What?? I am surprised..I am in the US..MA... I have no trouble getting appointments at all..hmmmm

[GillyGangGong]

Take pictures of it to show your Rheumatologist x

[Hidden]

Hi try using a sun protection cream I've been using that for 2 yrs now amber solaire it helps with face burning up try that first and then use a normal cream on top if you need it. Aloe vera is another good one for inflammation both can be used together. Don't use any medicated creams until you see your rheumy. Hope you get well soon.

[lilredhen]

I live in the U.S. and have excellent insurance yet I still cannot see the Rheumie for 3 months, they are booked out till then...so it isn't just in the UK there is a waiting time. I think there are so many of these auto immune diseases being recognised now that the specialists can't keep up with them. I hope you can get some relief in the meantime, this site has lots of friendly people who have been there and can make suggestions to help.

[Lynderland in reply to lilredhen]

Thanks so much, I am in the US too. Like this site a lot - people have alternative ideas, not just mainstream.

[Florence91 in reply to Lynderland]

Antihistamines like piriton will help the itching and swelling alongside HC cream but last time my facial rash spread it was due to infection -so be careful and consult your GP if this goes on! Presumably he/she could get you an urgent appt with your rheumatologist if nec. Hope it clears soon!

[ShootingStars in reply to lilredhen]

There is a shortage of Rheumie's in comparison to the entire population, unfortunately. Seems like it's a world wide problem. Huge line to get in to see one. I always get myself put on a waiting list. I had to wait 5 months, was on the waiting list, then had my appointment moved up a few times. Then suddenly, they had an opening, called me, and I got in to see a Rheumie in two days. Unfortunately, she was not at all prepared, didn't have my labs, misdiagnosed me, and was all around pretty darn awful. Put a very bad taste in my mouth for Rheumie's. This was the second one I'd ever been two. The first also completely missed my autoimmune problems, Hashimoto's.

I wish everyone health and well being, and a speedy resolution to their health issues!

[Biloxi]

Try A+D cream. My doc recommended I use it on Eczema. She says it helps the skin heal itself naturally, and would work on my lupus rash. It has helped me, although I haven't tried it on my face. My lupus rash sounds similar to yours (not butterfly). It's on my forehead near my hair line, and on my left cheek near my nose. At first I was given a steroid cream (Triamcinolone Acetonide ointment .1%).

It worked then, but now (5 years later) it doesn't work as well. They should be able to give it to you easily if you ask.

[Lynderland in reply to Biloxi]

Thanks, Biloxi, that sounds great. Is there a specific brand? I don't think I've ever seen it.

[Biloxi in reply to Lynderland]

I live in the USA, and the brand is A+D. It's for diaper rash, but can be used for adults skin issues too! Maybe ask your pharmacist what they have otc that's similar if you don't have it where you are. I found it on the baby isle of my grocery store.

I am looking at it now: A+D by Bayer.

They have a website: mya+dbaby.com

They have 2 kinds that I know of, one with Lanolin 15.5% and Petrolatum 53.4% (I only tried this once today)

The other has Dimethicone 1% and Zinc Oxide 10% (I've been using this for 3 months. I'm trying the other one now to compare which works best.)

I hope this helps your rash!!!!

[Lynderland in reply to Biloxi]

great - I told my sister about it too.

[Wildcats85]

Maybe you can get into a dermatologist faster. They see Lupus patients.

[Nelly10]

Hi there, I am also new to all of this. I went to a private dermatologist after being driven out of my mind with a discoid rash on chin, nose, and mouth.. She was wonderful, took one look at me and diagnosed it as lupus. She took a skin sample and sure enough 2 weeks later the results confirmed lt. She gave me a cream with cortisone which isn't really helping. I later went to my GP (I live in Barcelona) and she was good - got me into see the rheumy within 3 weeks. SMy GP had me do blood samples and x-rays ready for my appointment. Rheumy was ok and has asked for more specific blood samples and booked me in with a dermatologist. All this within the next month.... so, I feel quite lucky after reading how long some folks are waiting.

[Chanpreet_Walia LUPUS UK]

Hi Lynderland,

Welcome to the LUPUS UK HealthUnlocked Community! We offer a free information pack which you may like to download or request here: lupusuk.org.uk/request-info...

Have you thought about getting a referral to a dermatologist?

Although you have not yet had a diagnosis of lupus, around 60% to 70% of people with lupus report some sort of skin problem. You may like to have a read of our guide on lupus and the skin here: lupusuk.org.uk/wp-content/u...

90% to 95% of people with lupus will experience muscle and/or joint pain. We published an article on our blog about pain management which contains helpful tips and information: lupusuk.org.uk/pain-managem...

An ANA test indicates whether or not a person has an autoimmune disorder. To find out about the specific tests and criteria that are needed in order to make a diagnosis of lupus, click here: lupusuk.org.uk/getting-diag...

Have you tried ringing the rheumatologist’s secretary for any cancellations?

You may be able to fill an appointment slot which someone else has had to give up.

Please let us know how you get on, wishing you all the best.

[Lynderland in reply to Chanpreet_Walia]

When the walk-in saw how bad the rash was, they called around and I got one for May! - a cancellation. Thanks for all the info.

[lilredhen in reply to Lynderland]

That was a stroke of luck! I hope you have a successful appointment and can get the relief you need. Let us know how it goes. Take care.

[Legos]

put vitamin e oil on it helped me