Malar rash self help

[crazyk]

I have what I think is a malar rash. My GP also thinks it is a malar rash but has run out of ideas on how to treat it and so has referred me to dermatology which has a 6month waiting list. My rheumatologist has in the past dismissed it as nothing to do with my lupus as my bloods are all fine.

So I am now left with no treatment for 6 months and a rash that is very itchy, painful and waking me up at night!

Can anyone give me tips on how I can manage it in the meantime? Any suggestions will be gratefully received.

[LupieMani]

Hi Crazyk. Sorry you're going through this. We could do with many more consultants that pay better attention. I have hidradenitis and the itching can be insane. To be honest, I usually just scratch until I'm raw but some of the ladies on here have said oatmeal baths work wonders for itching. I have also had some success with cold compresses and coconut oil - not together :DHope one of those helps. Good luck.

[crazyk in reply to LupieMani]

Thank you. I am doing cold compresses and they definitely do give some relief. Coconut oil in the past has made me worse as it makes the rash hot but maybe that was more eczema? I'll try again and see.

[sarahalice]

I have tried to walk through the rheumatologist door, but barely could and be covered in rashes head to toe, then told my bloods are good atm. 🙄

I can get bad rashes especially on my face and arms, had all the steroids creams etc and they didn't work. The best things I use is by a little run company called Ava Estell Natural skin, I use their scrub, magic cream and summer cream. My rashes have improved so much! It's not the cheapest creams but they always run offers. Definitely worth a try, along with your daily 50spf.

Good luck x

[crazyk in reply to sarahalice]

My GP has agreed to speak to my rheumatologist as she is convinced it is lupus, so hoping they will do something next week. I'll have a look at Ava Estell natural skin. Thank you.

[Krazykat26]

Hi crazyk 🤗I don't get the Malar rash but I do have subacute cutaneous lupus (SCLE) n am mainly managed by dermatology. Dermy appts are always a long time coming in my experience!!

So I get rashes everywhere except my face but I am on lots of meds now including hydroxy, methotrexate and steroids (prednisolone).

I'm prescribed dermol 500 lotion..it's quite thin n a little bit goes a long way..it's used for dermatitis n eczema n is safe enough to use on children..u can buy it over the counter..I think it costs about £10. I also use it as a soap substitute..but it can make u quite slippery in the shower so do be careful!!

To help with the itch I take antihistamine.. Piriton again it can be bought n is not too expensive!!

Keep a symptom diary n note how your rash is on any given day..including things like what the weather's like n what you've eaten n how u feel generally. This has been so helpful for me coz I've been able to work out certain things that trigger rashes. Take photos of rashes too coz it's not unusual for rashes to disappear as dermy appt approaches. My dermy always has a look through my skin photos.

R u photosensitive? I have to cover up head to toe regardless of whether the sun is shining or not..including wide brimmed hat n gloves.

Aloe Vera gel is also very soothing on the skin.

I hope you find some relief soon 🌈😽😽xx

[crazyk]

I am definitely photosensitive. Haven't been in the past so this is something new. I will start keeping a diary. I have taken photos for my GP so will keep these as unlikely to see a dermatologist in the flesh! Thanks for your other tips as well.

[Ingrid1234]

I am surprised you haven’t been prescribed some sort of cream, lotion or ointment for topical application?

There are different strengths eg Hydrocortisone, clobetasol propionate, dermovate, betamethasone etc.

These skin meds calm things down.

I’m also prescribed Protopic which is an immunomodulator to alternate with the steroid.

[crazyk in reply to Ingrid1234]

The creams my GP has tried so far haven't done very much so she is at a loss as to what to do. I think she thought I would be seen a bit quicker! She is speaking to the rheumatologist so hopefully between them they will come up with a plan whilst I wait for dermatology