Lupus rash?

[SarahLuna]

Hello everyone, a question about the rashes you can get with lupus.

I've never had rashes before and have had SLE for 10 years now, and all of a sudden out of the blue I've been getting really bad rashes. It seems to be worse in the night or when I'm sat down like it react to heat once it started but I don't think heat is triggering it.

A day or 2 after it starts I get all the lupus symptoms flaring up, fatigue, shortness of breath, headache, dizzy, sick, fevery/coldy type feelings, aching muscles.

It looks like hives though so I'm confused as this isn't what I understood lupus rash to be like. It reacts to my skin being touched/scratched and blows up and gets worse.

I'm going to try and attach a picture of it!

Rhumy put me of a 4 week course of steroids in October that cleared up the rash but all the flare up symptoms lasted about 10 weeks. They have been slowly improving (steroids course ended about 6 weeks ago) but suddenly the rash has come back and all symptoms have flared again massively. I can barely manage normal life things due to them right now. It's all pretty rubbish

Any ideas?? I know it's hard to tell from a photo.

[Paul_Howard Partner LUPUS UK]

Hi SarahLuna ,

The rash looks very sore. It sounds likely that it is a symptom of your lupus due to the flaring of other symptoms and its response to the steroid treatment. Are you on any other treatment for your lupus at the moment? Is your doctor aware that you are flaring again now that the course of steroids has stopped?

We have a booklet about skin involvement in lupus which may be of interest to you. You can read or download it on our website at lupusuk.org.uk/wp-content/u...

[SarahLuna in reply to Paul_Howard]

Thank you for the link, I will have a good read of it.

It is driving my crazy although I would happily live with the rash everyday for the rest of my life over the fatigue and fevery feelings ! It feels like I'm perminantly 'coming down with something' even though I know I'm not. 😕

I have been to/called the GP so many times over the past few months I feel they must think I am the worst hypochondriac of all time! I do feel now like they are just fobbing me off and have absolutely no idea what to do next :/

I have called my rhuemotolgist this morning and left a voice message.

[Paul_Howard Partner LUPUS UK in reply to SarahLuna]

It is often the case that GPs don't have very much experience with conditions like lupus, so contacting your rheumatologist was a good idea. Hopefully you will receive a response soon. If not, perhaps your GP could arrange a referral to dermatology?

[SarahLuna in reply to Paul_Howard]

I have managed to get a Rhuematology appointment for tomorrow as they had a cancellation! fingers crossed they can help!

[Naz2005]

Hi i had a similar rash all over body & face about 2years ago before i got LUPUS (sle) diagnosis i was referred to dermatologist who said i had a conditon called UTRICRIA might have spelt it wrong been in antihistamines since hope you soon find out whats wrong all the best sending you luv & hugs xxx

[SarahLuna in reply to Naz2005]

Hi Naz,

I've been doing a fair amount of research today and Autoimmune Urticaria seems to fit it fairly well, which can go hand in hand with other autoimmune conditions. Perhaps thats the kind that you had?

[Naz2005 in reply to SarahLuna]

All the best hope you get answers xxx

[Krazykat26]

Hi SarahLuna

Oh yes I know that rash well n have currently got a similar back to yours. I was diagnosed in Feb 2017 with SCLE from dermatologist.

Steroids do usually help to lessen it but I have had problems coming off of the steroids as the rash comes back along with other symptoms..last year my dermy put me on immune suppressant so I'm trying that alongside steroids oral and ointment and hydroxychloroquine..I take piriton when I'm having itchy skin issues as well..which is most of the time to be honest!!

Obvious questions that dermy will ask is change in washing powder, soap etc to rule out allergy. I'm prescribed Dermol lotion as well which is a thin lotion that cools the skin and relieves itch..u can wash with it too and it's used for eczema and dermatitis..I use it constantly!!

Do take photos of any changes in skin because it's good to be able to show the docs without having to undress as I find that with my back it's tricky getting clothes on and off.

Your rheumy may put u on another course of steroids..maybe ask for a bit longer course..I started having two monthly course starting on 20mgs prednisolone for two weeks n then reduce by 5mgs every two weeks but as I said previously I haven't been able to stop them completely..I'm currently on 7.5mgs daily n I've got a nasty back which has got progressively worse over the past month. X

[Boudica1]

Hi. That looks like my back at times. I had a skin biopsy and was diagnosed with Urticarial Vasculitis and now have Jessners Lymphocytic infiltration as well.

Antihistamines did nothing not even when they doubled the maximum dose. Eventually they gave me a very strong steroid cream and put me on hydroxy and finally after 2 years the main rash has gone, just waiting to see what happens in the summer now as last year I had 3-4 other types of rashes.

I have also finally got a rheumatologist who knows his stuff and has diagnosed me with Sjogren's.

Good luck for tomorrow.

X

[SarahLuna]

The rheumatologist has doubled hydroxy to 400gm (I've been on 200mg for years) and put me back onto steroids. I'm so worried as to why all of a sudden after years of being in 'remission' lupus seems to have kick started and slammed back in again with no warning, I feel like I've crashed into a brick wall. It feels like I have a fever all the time and can barely manage little walks to the shops, I've had to leave my job and I can't stop worrying about what I'm going to do if it doesn't improve, or gets worse. I asked rheumatologist what could have caused it and why all of a sudden has it changed so much as I never used to get this rash before. He just kept saying that they don't know.