Rash

[kazmac45]

Anyone have any thoughts on this rash?

It's on my arm, but also on my side and my thigh, although a bit less severe.

The itch is driving me mad and antihistamines are doing nothing.

My skin biopsy suggested possibly Urticarial Vasculitis.

I'm awaiting a dermatology review on the 25th and have heard nothing from rheumatology yet despite the consultant knowing my results and the dermatologist copying him in to her letter 10 days ago and my having rung his secretary 3 times.

I'm being driven insane by all this! And the itch is intolerable! 😢

[willybear]

Hi. I really feel for you as I am suffering from a similar rash to you. I have had it since April (it is now September). I've seen 3 different GPs who don't know what it is. I've been given steroid tablets and creams which help a little but then it just comes back as bad as ever. The rash is on the back of my neck, my scalp, back and shoulders.

I finally got an appointment date for dermatology for 25 October - another 7 weeks to wait. I have spoken to the nurse at rheumatology ( I have SLE) who said she would advise my consultant but that was in June and I haven't heard anything from them.

I agree the itch is intolerable and so difficult not to scratch. I've had this for over 4 months now and it seems nobody is willing to help. I'm just being passed from one place to another.

I hope we can get some help soon. Take care.

[kazmac45 in reply to willybear]

It seems to be the norm for people to be left with no clear answers and to be left wondering what's happening for weeks on end. I've explained to my rheumatologist's secretary that this is driving me mad but there are also other patients to be seen.

However that's of no consolation when you're left itching and in pain.

I hope I hear soon or I'm going to go back to my GP and ask to be referred elsewhere 🙁

I hope you start to get some answers. In the meantime, sending itchy hugs! 😁

[willybear in reply to kazmac45]

Yes I totally agree. Thank you and good luck!

[RhondaB in reply to kazmac45]

You need to tell that secretary that you understand there are other patients but your a patient to and if they want to keep you and you not complaineto the medical board you suggest they get you in or the dr suggest something, cream,, presc. Hell he works for you.

[leslieliesel in reply to willybear]

So, Lupus rashes do itch?? I have read that they do not ..but I itch....I was just Dx'd with Discoid Lupus and am in the process of being tested for Dermatamyositis(sp?)......I'll take the lupus, but the DM scares me even more...and I surely do not want Both

[Alliand in reply to leslieliesel]

Hi leslieliese,

How were you tested for dermatomyositis as I see your post is 7 mo. old so imagine you have an answer? I do not test positive for lupus, but am C-ANCA+ for vasculitis. I have a rash on the sides of my feet that looks like your rash; occasionally it will itch, but usually not. Unfortunately, there can be cross-over symptoms and one can have co- existing autoimmune disorders. A new dermatologist froze the areas with a high tech liquid nitrogen machine; it could be actinic keratosis (pre-cancerous lesions) . But I hope you know whether or not you have dermatmyositis or not, and if so how was it discovered? Did you have muscle pain as well?

[leslieliesel in reply to Alliand]

Hello Alliand,

I am negative for dermatomyositis...there are markers for that as well..fortunately all of those test markers were negative....So as of now Subucate cutaneous Lupus it is...I think the drs questioned Dermatomyositis because of my chest and back rash..and I think my age..I was 62... 7 months ago..kind of old for a lupus dx....

Your Dermatologist froze the areas...no biopsy?? What is your Dx??

Oh Also before all the ANA etc testing My Dr thought psoriasis .....I actually asked for the biopsy because I have been getting rashes for years ,and they are always named something different.....I wanted to know , not have a guess.... My symptoms were rash, hand wrists ankles elbows painful..generally not feeling well and that deep exhaustion....Hydroxycholoquine has helped with all but exhaustion

Xx

[RhondaB in reply to willybear]

Ask to be tested for discoild lupus, it effects the skin.

[Redirish79 in reply to willybear]

UGH!!! That’s THE rash! Or looks just like what I’ve been dealing with for 9 years!!! Sleep with ICE! The itching is so intense and I’ve damaged and scarred my arms so badly now. Bleeding on sheets. Broken up sleep to get more ice. I was diagnosed with SLE (and mixed connective tissue..Ra and fybro) but I’m second guessing all of that now. I take hydroxychloroquine and amytryptiline to manage both however my rheumatologist swears it’s not those drugs causing it. I spoke to pharmacy AFTER 9 years of rheumatologist guidance and pharmacist specialist said hydroxychloroquine can cause that. When I called my rheumatologist with this info it’s like she mad at me now. Told me to go off hydro for 4-6 and see how I do. Yet for the past 10 always told me I’d never B off it. She’s not the one getting up 3 xs a nite for ice. Hundreds and hundreds spent on all kinds of creams and meds for this NOTHING but I’ve helped. Had allergy tests… biopsy.. bloodwork.. swabs… NO ONE knows? So frustrated and physically drained. I walk around work at times with an ice pack duct taped to my arms?!

So…. As of today… I’m stopping hydro. Not looking forward to my symptoms that most likely will come back. (Been on this since 2008)….but I’m done. I HAVE to figure this out!!

please help! Can’t take anymore

[Julie9627]

I get the same thing on my arms and legs my r.a doc and dermatologist say it is discord lupus flares , they itch so bad I will make my skin bleed at times , be careful with the scratching though as I have scars all over arms from scratching so much . Clobetasol from a prescription works a little bit with itching .

[kazmac45 in reply to Julie9627]

I have scars from a previous bout of this but my dermatologist got annoyed when I called them scars and told me it's 'staining' and will fade in time. Yeah, so do 'scars' ...... and they're not appearing in any hurry to fade 😨

[Julie9627 in reply to kazmac45]

I have had my scars for 5 years in the winter they don't show that bad but in the summer get a little color and they are very noticeable. My doc calls them scars and just urges me not to scratch which is easier said than done . Also get them on my head legs and on rare occasions on my buttocks, the medication does work but it burns since I scratch to they are bloody and raw . I hope someone can help you as it is a pain in the butt , my doctor also prescribed plequnil first but since I'm unable to swallow them put me on aralen for flares and muscle weakness plus muscle spasms

[leslieliesel in reply to Julie9627]

I itch also.....as bad as this sounds, I take a bit of comfort to read that others with Lupus itch....I am being tested for Dermatomyositis(sp)..I was just DX'd with Discoid Lupus...I just don't want both!!

[Cas70]

I was told to get Dermacool - it has not gone away totally but really helped - the itching has really got to the point where I can resist. Get the strongest Dermacool which is 5% - don't let them give you any less. It is only menthol in Aqueous cream and was recommended by an NHS Dermatologist- only positive he gave me on fought for appointment! He actually said it was "my age". Not my Lupus and Sjogren's - I have got beyond laughing ! Good luck - keep fighting

[kazmac45 in reply to Cas70]

I have Dermacool and it's the only thing that gives any relief. However it can't be used on broken skin and mine is at the minute 🙁

[Chanpreet_Walia LUPUS UK]

Hi Kazmac45,

Have you thought about discussing this with your GP whilst awaiting your upcoming dermatologist appointment?

There are a number of steroid creams and ointments that can be used to treat rashes that range from mild to strong which you can discuss with your GP or Rheumatologist. You may like to have a read of our guide on lupus and the skin here: lupusuk.org.uk/wp-content/u... .

We published an article on our blog about coping with itchy rashes which I hope you find useful: lupusuk.org.uk/coping-with-...

Please keep us updated, all the best.

[kazmac45 in reply to Chanpreet_Walia]

Thank you 😊 I've had various steroid creams and Icthamol paste between my GP and dermatologist. None worked, except the Icthamol paste which cleared my arms & legs but my arm has completely broken out again.

My GP now wants to be guided by the consultants because it's not cleared with anything we've tried.

Unfortunately the rheumatologist didn't want to know last time I saw him but I'm still awaiting a follow-up from him and it's as yet not forthcoming. I've called his secretary three times in the last three weeks and she's now grumpy with me.

I'm totally fed up - which plays right into the rheumatologist's hands because he said my 'diagnosis' was depression Sand that I need CBT! 😡

[Celestine71]

It's prickly heat. I suffer with it terribly. My medication made it worse. Had to take prescribed anti histamine and a steroid cream but still I get it slightly x the rash that you have is the result of you scratching. Go to your doctor x

[kazmac45]

Eventually heard from the rheumatologist ..... discharged!

Also reported on two examinations that he did NOT do, saying they're normal or not a problem.

I'm raging.

We'll see what the dermatologist says on Monday.

My GP also wants to see me re the questionnaire the rheumatologist 'diagnosed' depression from!!

I've already told him I'm not depressed. Peed off, yes; but not depressed.

Totally frustrated and angry 😡

[RhondaB]

Hello. I hot the same rash in 1995, 12 yrs before I was diagnosed with Lupus. Had no idea what it was. It disappared about a wk later. I ride a motorcycle and at the time it was summer so I was on long roads in wooded area and thought It was maybe bug bites. They gave me no problem except a light itch sometimes. By the time i was going to go to Dr they disappeared and never had the problem again.

[RhondaB in reply to RhondaB]

Oh I have Lupus SLE which affects my whole body and Discoiled Lupus which is of the skin.