I was diagnosed with lupus SLE in 2006 but have been ill as far back as I can remember. I was eventually told I have ME in the Nineties.
The lupus has damaged my lungs and I have had several medication including Cyclophosphamide but nothing has helped. I am now down to Prednisolone 10mg.
Whilst sitting down on Tuesday I suddenly felt an itching on my arms and to my amazement there were these spots on my arms in clusters. They are very itchy and the area around them very red.
I am also having back and headache along with fatigue and general malaise. I am so very tired as I am awake most of the night trying not to scratch the itchy spots/rash.
Has anyone had these spots or rash? I have not been out in the sun and not sure if I should go to see my GP as it is such an effort to get ready to go. I am concerned it might be chicken pox or shingles.
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Maureenpearl
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I get very small spots/rash on my arms, it is usually the lower part. It sometimes itches but not always, but I can feel it as raised bumps. It gets worse if I stay out in the sun for any period of time and I need to cover it with suncream all the time!
Whilst I was on Chloroquine I had masses of red spots which were very, very itchy and turned into a wet form of excema, I had to see a dermatologist who gave me these horrid wraps to put on my arms. They took me off the Cholorquine and it stopped, I was left with melanin loss from my arms - in patches.
You probably have none of this, however I definitely would check it out with your doctor or Consultant who ever you see first.
Thanks for your comments. My husband just rang me to say I was boiling hot in the night so I will ring to make an appointment to see my GP or else wait to see my consultant at the end of the month.
I have this on my chest now & is seeing the consultant today, my gp thinks it could b the hydroxychloroquine. Hopefully I'll get some answers, as the itching is driving me nuts. Was diagnosed with SLE about 5 years ago, all has been ok up till now.....
I had this all over my body for a week continuous and it drove me mad..this is how the doc diagnosed me with autoimmune disease..the steroids have helped with the rash but am left with chronic pains in my joints daily..xx i used umovate cream on rash it was very helpful xx
Just got back from seeing my GP and I have been given antibiotic for folliculitis (infection of the hair follicles). I am still feeling awful and also that was why I was so hot during the nights.
I am not very convinced about this as the spots are on my forearm on the inside and I am not an hairy person.
Glad you posted your ?. I get these sort of arm spots too & so does my husband who has crohns disease (also autoimmune)
He gets them mostly on his legs. His gp said folliculitis and treated him with antibiotics too. We know that crohns does affect the skin too, and make you prone to rashes. He gets Allsorts, including itching dry areas of skin. But his folliculitis type rashes are definitely clearly where hairs exits and it's not hard to imagine the hair & the rash are related
Before the nhs figured out my SLE diagnosis, a few years ago I showed a bad flare spotty arm rash flare sorta like yours to my gp, he said that's nothing, just normal, didn't even give it a name,ntotally blanked me, and gave me steroid cream to rub on spots. Eventually the rash went away. But as with all my rashes lifelong this had flared in warm weather, and has again since then. I just use the cream
Last year I found out I've had SLE since I was a toddler when my first rash was dreadful all over torso & arms (totally freaked my mother). So now i'm finally re-diagnosed, every time I get any kind of rash I am guessing it's probably at least partly due to the way lupus affects my immune system. Anyway, I started taking 400mg plaquenil daily last June 2011 and since then have had hardly any rashes, just a few beginnings which I put Dalacin t lotion or dermovate on and eventually they go away.
so, thanks for asking your ? Cause I really don't understand this rash business as well as I would like to even though I've been reading up on lupus & rashes. My impression is that there are various forms of rash we can get and various reasons for rashes. It seems we are sorta predisposed to pretty much any type of rash or skin infection going AND as well we may get rashes that are specifically due to/symptomatic of lupus itself. So.... my impression is that IF one of our rashes responds to a topical RX that's fine. but If the rash doesn't respond to topical RX we may need oral RX (something systemic). but I get the feeling it isn't helpful to just tell a lupus patient that their rash is not influenced by having lupus, eg to say that's just folliculitis. Cause lupus can make treating even folliculitis slightly more involved.
So, my ? Is: is it appropriate to look at most any rashes a lupus patient gets as at least in part being influenced by lupus. Possibly this seems a vv basic slightly silly ?, but I think it ties in it with what you're going through, and I would really like to understand this rash stuff better....
Maybe I should post this as a separate ? ......
Anyway, take care! Hope your rash responds to treatment ASAP
Ps I didn't have the malaise you describe with my versions of what seem to me kinda like your sort of rashes, and my husband doesn't feel malaise with what his gp calls folliculitis.
Thanks for your reply. The doctor I saw did not look at lupus as he was new (training to be a GP) to the surgery and did not know me.
I did tell him about the back/headache and he really wasn't listening but I thought I would give the Antibiotic a try and if the rash doesn't go away make another appointment to see the GP I usually see.
This rash that I have the spots are large more like shingles type rash but thank God it was not.
I have sle and on chloroquine for 3 years now and rash flare ups like yourself. Tried various creams emollients but it never goes away. Just seen another consultant who is taking more in-depth blood tests as like you the itching drives me insane. I take cetrizin 3 times a day but find the only temporary cure is to use ice packs! My joints are awful too. I’m praying they will find another diagnosis
I Do hope you will get some relief soon, the itching did go away and during the summer I make sure I use factor 50 sun block and try to cover up with factor 50 hat and etc.
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