Butterfly rash

I've had a skin condition for about 8 or 9 months involving rather nasty pustuals mainly on my face and forehead, plus I also get the odd one on my upper chest and shoulders. My nose suffers badly and is more or less covered with a red rash and small septic spots and pustuals...it looks similar to a heavy drinkers nose. I also get small sores on my scalp. This past two weeks the condition has worsened - the pustuals are bigger, more painful and take longer to heal. That said, things do seem to be beginning to calm down. I visited dermatology approx 4 months ago, when the condition was nowhere near as bad as now, they said they thought I had either psoriatic or sebborheic dermatitis...can't remember which, but the condition was nowhere near as bad as it is now and they prescribed some topical cream and discharged me. I went for a dental check up yesterday and the dentist pointed out that I had a butterfly rash on my face and suggested that I get it looked at as it could be lupus. Cripes, as if I didn't have enough things already wrong with me and that includes RA. :-( Anyway, when I got home and looked in the mirror the butterfly rash was well and truly there. Obviously I'm concerned if I have lupus and although no one can say for sure, I'm wondering if the skin symptoms I'm experiencing sound like lupus or more like some other condition as I've read the the butterfly effect can be caused by other diseases?

Difficult to provide an answer I know, but when I researched the lupus rash I couldn't find any mention of associated pustuals, so am hoping...no praying, that I have some other lesser condition.

edit...forgot to add that I've had a couple of blood tests done for rheumy over the last few months. Would these these indicate that I have lupus?

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18 Replies

  • Hi Wishbone,

    You didn't mention which test you had done but If your doctor suspected Lupus you will likely have had an ANA test and if positive more tests would have been ordered, for instance a dsDNA test but there are many other compliment test they can do. The ANA tests will let you know that you may have an inflammatory disease but it gets tricky to determine which one so other tests will be done. You can also have a positive result and not have a disease. Your doctor is the best person who can help you sort it all out.

    One thing to be aware of is that the clinical evaluation is the most important part of getting a diagnosis. I suggest taking a picture of your butterfly rash in case it goes away before you get in to see the doctor again.

    Have you not gotten the results back from the tests you said you had earlier? Didn't you discuss this with your doctor? If he tested you for RA ( I assume that's what you meant by saying you were test for Rheumy ) then you likely had an RF test as well as anti CCP test. I suggest first finding out which tests you already had done and have your consultant go over them with you and let them know you have new symptoms.

    I'm sure it will all be sorted soon and you'll feel a bit more at ease knowing what the next steps are. There are loads of ways to treat many things these days so try not to worry to much!


  • Hi Lucy, thanks for replying.

    Where do I start!...there's so much going on with me that it would take an age to explain. Enough to say that due to complications caused by other chronic conditions rheumy are having great difficulty finding meds that will work for me. Think there's only about 4 left for me to try. So, if I do have lupus on top of RA plus the other conditions I have, I could well be in seriously deep trouble...hence my concern. I'm currently on 400mg of Hydroxy, which does seem to be helping a little.

    As for the blood tests - I have not heard previous results but pressume they were okish as rheumy are pretty good letting me know if somethings wrong. I have a bloods form here in front of me...rheumy wants me to have my bloods done a week before she next sees me in September so has given me a form in advance. She has not ticked ANA, which if I'm understanding you correctly doesn't need to be done because I already have an inflammatory disease in RA? I did have some nasty pustuals when I last saw rheumy 6 weeks ago but no butterfly rash, so I' m pretty sure she did not suspect lupus. However, she was concerned enough by the condition of my skin to arrange a dual appointment in September for me to see her and a dermatoligy professor together, so hopefully I'll have a better idea of what's going on. Apparently, these dual appointments don't come round very often hence a bit of a wait. I'll be sure to take some photos before then.

    Anyway, here's what's ticked on my current bloods form, which I'm pretty sure is the same as previous tests.

    Urea & Electrolytes, CRP, Random Glucose and FBC. She also has something written in the Other Tests section, which unfortunately is the usual doctors scrawl so undecipherable to the common or garden layman like myself. :-)

    edit...apologies if I haven't explained things properly in this or my initial post, but I've had RA for 13 years.

  • Sorry to hear that you have other issues to deal with that make treating your RA that much more difficult. As for the ANA test it does get a little tricky in that it can be positive with other inflammatory diseases but I don't think you would get a diagnosis for Lupus without a positive ANA test. Almost all patients with Lupus test positive for ANA and then go on to test positive for the other compliment test like dsDNA. I just wanted to point out that even though 95% of those with Lupus have a positive ANA you can test positive for it and have another disease, like RA, for instance but not Lupus. And of course you can have RA and test negative for ANA. Confused yet? There are also different patterns that they see under fluorescent lights, like homogenous, speckled, etc. which also helps your doctor nail down a diagnosis

    You should check the NRSA Lupus website as it will explain it much better than me.

    Best thing I can suggest is to take a picture of your rash as it may calm down before your appointment and then show your doctor. She will know what tests to run. I know it can be tricky to nail down a Lupus diagnosis but the Rheumatologist are trained detectives. It may take some time but they're gradually making their case as new symptoms arise. You just have to provide all the puzzle pieces so document everything thats happening to you and present it to your doctor as clearly and simply as possible. I try to keep anger and frustration out of the appointment and stick with the clues that will help my doctor get to the bottom of it. Here's hoping you have a good Rheumatologist because that becomes a whole different story.

    I wish you the best.

  • You explained the ANA thing and the complications involved with diagnosing lupus just fine. I have a lot of confidence in my rheumatologist...she's great!

    Thanks again Lucy

  • Hi Wishbone, not sure if this helps but everything you describe with you face/shoulders etc sounds very similar to me. My GP has diagnosed me with Rosacea, the redness, spots, pustules over forehead/face/nose/ shoulders and chest area. It maybe worth asking if it could be Rosacea? I'm not saying you do have it but could be an option. Rie

  • Back a couple of months ago a doc at out of hours said it looked like Rosacea and what you describe sounds very similar to what I have...I live in hope. :-) Don't know about yours but these pustuals are particularly unpleasent little things, they repeatedly burst, fill with puss and burst again, this can happen up to 6 or 7 times before they begin to dry up and heal. Even worse, and what makes me really angry is they've done nothing for my rugged good looks. ;-)

    Thanks Riedenise

  • No idea but my husband who does not have RA has Rosacea the GP prescribes him a cream and it stops it. He also uses a Clinique sun factor 30 cream with slight colouring properties as the condition is worse in sunshine. You would never know he has it now but its taken a while to get under control. It might just be that, so please look it up and try to keep out of the sun or use high factor protection.

  • I've been prescribed two creams called Daktarin and Daktacort, the latter being a hydrocortisone, which I use the least often of the two.. They do calm it down but don't come anywhere near stopping it. I also use a prescribed shampoo.

    Thanks medway-lady and glad your husband's condition has improved.

  • I'd strongly urge you to avoid sunshine and ask the GP is it Rosacea, and if it is the cream is called Diciofenac. Its worth a try at any rate. Best of luck and my husband always thought it looked worse than it did. I pursued him to cover it up with some make up and probably because it is protective it really worked. And it can't be seen. The Clinique girls said a common purchase for men.

  • I live in Wales, so very little sun to avoid. Seriously though, hydroxy has helped a little with my RA , but it's nowhere near under control so I have difficulty walking any distance and don't venture outdoors much these days. Not being able to drive doesn't help but family and friends take me out for lunch etc so I'm not entirely hermitized. If I can get on some meds that work for me then things will definitely change and I'll need to apply lashings of sunfactor 30. :-)

    Will try some make up when I next flare - think it will look a bit better than having a couple of plasters stuck on my face, which is what I did to hide two unsightly pustuals when I went out for for a meal last week.

  • I promise you they colour match it and it is totally great. My husband used to get embarrassed about it but now its under control he's fine. Real men do wear make up lol x

  • A more common one that lupus is actually rosacea. I was investigated quite thoroughly for lupus on the basis of a very classic butterfly rash that had come and gone for 20 years or more, but in the end it was determined that it was rosacea. Interestingly, although mine typically is just redness in the usual butterfly shape, at times when it gets really bad it can go into those awful big pustules (that never quite get to a head) and can get very lumpy bumpy. i think that type of change would tend to indicate that it wasn't lupus. In the end with me it took not just several dermatologist visits, but me taking photos of the rash in between times, plus ruling out lupus (with blood tests) before I got the rosacea diagnosis. The good news is that unless you really need treatment for the lumpy bumpy stage of it, there really is no need (or usefulness for) ongoing treatment, other than learning what your own triggers for it are and trying your best to avoid them. If you google self help sites for rosacea you will get a lot of advice about how to identify and avoid triggers. I'd also strongly suggest taking photos of it at different stages so that when you go back to the dermatologist they have a bit more to go on that just what it appears like on the day.

  • It does sound rather like rosacea. I had it quite badly in my early 40s and was prescribed metronidazole gel (antibiotic) which really helped calm it. It is much improved now but I do have other complications with RA including gastro problems which can all be linked. Do hope you get somewhere with a proper diagnosis, good luck.

  • It sounds more like rosacea to me too. But might be worth having an ANA test if you have other medical problems as well as joint problems.

    I use azelaic acid gel now on a regular basis which keeps my rosacea under control. It does get worse when I have to put up the steroids, or I get hot in the summer.

  • Thanks very much all for your replies. Rosacea does seem the most likely candidate, and after reading all of your posts I'm feeling less anxious than I was before posting. To add to that...I managed to get an appointment with my GP this morning and she also suspects rosacea. She was going to blood test me but when I told her I was due one for my dual rheumatologist/dermatologist appointment in September, she couldn't see any point and left it at that. I asked her about trying a different topiclal cream but she said the stuff I'm currently using is very good and appears to be working, so best carry on with it. I couldn't disagree as my skin is a lot better this morning. Thes pustuals are really unpleasent little blighters, I'm amazed by the amount of rubbish coming from them...I never realised I had quite so much badness in me! :-)

    More good news is that I've recently discovered the probable cause of a long standing UTI I've had, and which some of you may be aware of. It's refused to clear despite being treated for months with the appropriate antibiotic. I had a cystoscopy a fortnight ago (nothing to it really!) ;-) which revealed a single bladder stone. My urologist seems quite confident that the UTI will clear once the stone is removed so I'm having it zapped with a laser, hopefully within the next couple of weeks. Once the UTI clears rheumy can try something stronger than hydroxy to control my RA.

    Thanks again everyone

  • I was given An Antibiotic lotion to put on twice a day, it helped at first. I have had to re-look at all the things I was putting on my face. Ive changed my face creams , my make up. I use everything Body shop Vitamin E range, touch wood , It seems to have nearly cleared up. I get the odd break through but nothing nearly as bad. One thing I would recommend wishbone as has others have, is Suncream. I use factor 50 on my face/chest/ neck. the sun does seem to aggravate it and makes things worse. again the one I use has vitamin E in so I'm sticking with it because it works for me. I think its trail and error to see what helps. Good luck lovely.

  • There are some drugs that induce lupus and when you stop taking them the lupus disappears. If, however, you have Rosacea, steroid creams should not be used as they make it worse. When I first got it, the GP prescribed steroid cream and it definitely made it worse. I then changed to antibiotic gel but because I also had the flushing that often comes with Rosacea, the gel dried immediately and peeled off my face - looked like I had leprosy, lol. So I then got antibiotic cream and it works a treat. Stays pretty much well controlled with just the odd breakout very occasionally. Clemmie

  • Dermatology warned me that the steroid cream could make things worse and told me to stop using it if it did. I haven't used it very much to be sure if it's having a negative effect, but did suspect this during a previous flare. Perhaps best not use it at all. I was also prescribed antibiotic cream but don't think it had much effect. That said, I only used it a couple of times and maybe should have persisted with it. Along with the medicated shampoo, I've also been prescribed a medicated washing cream - Dermol I think it's called.

    To be honest my use of these creams etc has been a bit patchy and going by what's been said in a couple of posts here, plus what my my GP told me this morning - I think I really need to get into the habit of using them on a regular, long term basis to have any chance of getting this thing under control.

    Thanks Clemmie

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