I know that SJS has a butterfly rash that can appear on the face but my question is about a rash that appears red and flakey. Not in a butterfly shape. It's mostly on each side of my nose, each side of my mouth, occasionally on my forehead and chin. I get a flakey rash that appears on my scalp too. Is this related to SJS and if so, what do you do for it?
SassieCat
What you are describing sounds like it could be Rosacea, or it could be from SS. I'm lucky, I have both and a dozen other rashes that no one can figure out what they are from. Your scalp may have seborrheic dermatitis, unfortunately I have that too.
Hi,
It's not Rosacea as my nose is not red, just beside the nostril's get a rash. I get it whenever I don't feel well, have a flare up or get really stressed out.
I used to use a harsh abrasive facial cleaner to exfoliate it and then let it clear up. I am noticing that it is appearing more often and the healing time is a lot longer.
SC
I'd also guess Rosecea. Just ask your doc to refer you to a dermatologist. It might also be excema.
Steve
Your nose doesn't have to be red for it to be rosacea. ;D Lucy
My face will just flush,, get beet red and my wife will comment that I look llike I hve been in the sun for hours,, but I havent been,, I cant tolerate the sun anymore
My little girl who is 4 gets facial rashes. She has sjs. The sun, stress and flouresent lights make it worse. I dont know if anyone else notices that flouresent lights bother them. But we cant even go into Walmart because she breaks out in hives. Jonnell and Jenna
Me...I get that and my primary doc doesn't know what it is...he says it's sun sensitivity or it's the disease causing it.
It takes forever for it to completely go away for me. Does yours take a long time to go away? I can't wear foundation...that shows it off big time no matter how I try to scrub off the flakiness. I don't get it on my scalp but years ago I used to. Now it just appears on both sides of my nose under the eyes, sometimes down my cheeks. As I speak I have one working on going away. I did get out in the sun a lot last week, but it didn't seem like I was out long. I get it sometimes near the corners of my mouth but not too bad. Sometimes it will show up on my forehead and chin too but not always.
I told one of my rheumys that I get this rash and was told it could be Lupus...that it doesn't have to be in the butterfly shape or remain only on the cheeks and over the nose. He got to see it at one visit and said it does seem to be Lupus related. Another rheumy told me the opposite. So... I haven't a clue. Wasn't that helpful? lol. Sorry. Just want you to know I'm in the same boat with you with no sure diagnosis of anything yet. We were pretty sure it was Sjogren's and/or Lupus, but now...I'm a walking enigma again.
Jonnell, I had no idea flourescent lights could cause it too. That is very interesting! We don't have any in my home but the doc's office does. I hate going to walmart...now I have a good reason to get out of it when I need to...the lights make me sick ;D Lol! Thanks.
Both my rheumy and dermy say that any of the connective tissue diseases can cause rashes. It's specific rashes that may point you in one direction or another, and even then maybe not. If you have the SSA antibody than you will have increased sun sensitivity anyway and will most likely develop rashes. Since that antibody can be in Sjogrens or Lupus, it can be hard to determine which one is causing the rashes.
Yes, my Rheumy saw it a couple of times, each time she looked at it and said it looked like I had SjS. I had an appointment once with her about 9 months before my old Rheumy retired and at first glance she said she wanted to run tests on me for SjS. Then when she became my primary RA she ran the tests and told me everything came back positive for SjS.
I've heard somewhere before and I don't remember if it was from RA but florescent lights can aggravate it. I used to work in an office and the florescent lights on never really bothered me though other than the sound of high pitched squealling they used to make.
When I am in the sun, even driving in the car, my face gets a real pink flush to it. RA said I needed to be careful while in the sun and use sunblock every time I am exposed to the sun.
Hi Sassiecat :)
I find these days I need sunblock when I'm in the car too! Summer wear - long sleeves - a big hat - sunglasses and sunblock! :( (I'm not particularly fair and used to get a really dark tan)
Take care - Scottie :)
They use fluorescent lighting at work but here they have the protective shields on them so I have not had an experience with that kind of lighting. I have heard that they can be bad for a lot of people but I know that everyone is different. I have to avoid the sun at all costs. I wear sunscreen everyday on my face, chest, and arms even on cloudy days because you can still be exposed to UVA and UVB. I use Neutrogena Ultra Sheer 85 SPF with Helioplex which is supposed to protect you from both UVA and UVB. Because I constantly wash my hands, I also use Neutrogena Age Shield hand cream SPF30 with helioplex. Both products recommended by my dermy.
I get butterfly, discoid, and SCLE rashes. I use my sunscreen faithfully because those rashes sure can be ugly. :-\
I'll have to try those products out. I'm really fair skinned (got that from my mother who was redhead). When I'm in the sun I get freckles everywhere and I burn easily. My summer tan looked like everyone else in winter. lol 8)
I do agree, the rash is not a very appealing look. I even had a coworker once mention to someone that they thought I was on drugs! Really made me mad!
Hi there,
My very first big flare I got the classic butterfly rash, and have never had it since. I also have rosacea-mostly in the ocular form, which I guess sometimes goes with sicca, but this rash didn't respomd to metrocreme and came just as I got really sick so doc felt it was a symptom of the disease. Maybe a dermatologist could determine the difference. My eye doc has me on minocycline to keep eyelid inflammation down so in my case,if it is rosacea, that probably is helping with the rash too. If your skin doc says you have it, be sure to let your opthomologist know too. Rosacea and SS is what they call "a very unfortunate combination", but antibiotics often help.
Also, don't know what youre on for meds but some cause extreme sun sensitivity. Maybe its just me but I think the auto immune stuff had made me even more apt to burn as well so I agree with the others-use a full spectrum sun screen and lots of it. I look like Casper the ghost, but I can live with it.
Take care.
The "Butterfly Rash" is a classic lupus symptom. Special,huh . Doctors can contradict each other while you endlessly test. Yes I get all this and more. Uv-b will flare these conditions, and it is in fluorecent lighting if not SPECIALY SHEILDED. I shop with a hat on and the Neutrogena ultra sheer sun block designed to block UV-b as well. Abbasgirl is right Lupus is also simular,very. Lupus often has HIGH ANA results. Test when you are flared, not at your doctors convenience,. A skin biopsy can help determine lupus. I'm very photo sensitive,and was called by the lab head when my direct ANA came up 393. She wanted to know if I was being tested for Lupus. I told her of autoimmune attack of my eyes and Sjogren's being my primary concern. So high ANA, Buttrefly rash, are Lupus assosiated. I've studied that in Sjogren's with Lupus people are often highly photo sensitive. My symptoms also include sensitve eyes dropping fatigue, mouth and tongue sores , difficulty swallowing, and occassioal night sweats. The rash starts red small bumbs and blisters, in a couple of days the become pimple like , then true pimples later. It is not Rosacea , the staphloccocus is typicaly everywhere. Our pores are tight ,skin is dry and Sjogren's is an inflamitory systemic disease. Blistering at any irritation isn't hard to understand, primarily the lymphatic system. Also why sores blisters and such heal slowly. More lympm action than healing blood, and in the meantime the white cells are busy plagueimg us ,only fighting off true infection part time. It uses body healing resources. I just remembered; Lupus causes the antiphospholid syndrome, I'm hoping to verify if I have it with. It can be difinitive for Lupus. Any way my case may be severe but ther are women here with a lot more skin answers than I .I hope to learn their tricks, my danruf starts at the back of my head and goes to my chin. Maybe Chamomile bath oils? Take pictures as these flares go through there changes, if the doctor doen't see the starting rash they often go for the easy or common answer. This is not easy and we are not common.Keep a diary and note symptoms, mark onsets, etc. on a calendar. "And God bless us everyone " as Tiny Tim would say.
The rash is not pimple like at all. It starts out slightly raised, red and scaley feeling. Then the skin flakes and it itches and burns. If I scratch it, it bleeds easily and I used to use a medicine (Loporex Gel) on it and it would make it go away. Now it seems to want to be a permanent fixture on my face. If I put the Loporex on it burns like the dickens. (get it - dickens and Tiny Tim) lol ;D
I cannot and do not wear any makeup and hair products can easily trigger it. Hairspray is the worst for my scalp, it starts itching so bad I want to scratch my hair off.
Today was the first day that I have felt somewhat decent in weeks. I tried to do a little around the house and went out with my youngest son to the Dariy Queen. We haven't done that together for a long long time. It ironic that when he was a little tike all he wanted to do is be with mom. Teenage years, and the last thing he wanted to be seen with was hanging out with mom. Adult years and now it's okay again to go places with mom.
Stupid question here, does keeping a diary really help. I can't imagine my doctor looking at it nor can I imagine what I would write.
SassieCat
Hi Sassiecat :)
I find a diary REALLY helps. Last December I saw a neurologist. He was horrible and the appointment was more like an interrogation than anything else. Stupidly, I hadn't done my 'homework' for the appointment. He wanted to know when I'd seen a neurologist in the past - when symptoms had started and when they'd stopped. How long present symptoms had been going on for - precisiely. He got really sarcastic when I couldn't even tell him when I'd fractured the bottom of my back. I know it was 1992 or 1993 but am not sure which.
Well - that wasn't good enough. He was sarcastic, insulting, belittling and nasty and at the end of the consyultation wouldn't even deign to answer any questions because he said I was wasting his time and there wasn't a thing wrong with me.
In the UK - we can't just sack our specialists. It doesn't work like that. We can, however complain about them. Unfortunately, presumably to cover his back, he made an appointment for a years time. This time I'll be ready. (Last time was not helped by the fact my thyroid was way out of whack so thinking quickly wasn't an option)
I've been keeping a symptoms diary since 1998. My homeopath wanted one. Before that I kept 'appointment' diaries not only for me but for all 4 kids and hubby too.
Now, I still don't know when I broke my back because I didn't go to a doc about it. It showed up later on an x-ray. I do know the date, day and time of my last appointment with a neurologist though in 1991. I also know since 1998, what symptoms started when and which worsened etc.
Now why didn't I remember before? Well the same week I was at the neurologist, I had my daughter at a dermatologist, one son at the dental hospital, another seeing a doc for something she needed antibiotics for and I was also working with friends on a puppet show, making sure kids were at dancing/gymnastic/swimming and footbal at the right time and place and quite frankly one year blurred into another.
You may not need a diary for now - but in 10 years time you may be glad if you keep one.
Take care - Scottie (apologies for being so long winded - I got carried away!) :)
Wow scottie - I would have gone ape if he spoke to me like that - cant you tell your Dr that you want a second opinion? You are entitled to it - I know as I did when I got short changed with my rhumy - he was not rude - but just useless:))
At least the second opinion clinic - out of my area - but they were excellent - an blood tests ans really took the time to talk to me - not that it helped as they had no answers! Sound familiar folks???
Issey
Scottie,
Well he really was a horses petuty! I don't think I would have gone back to him. I saw a neurologist twice in my life. I went there for the fibro and he was more concerned that I have a history of migraines and started trying to pump about four different presciptions into me. I tried one (Topamax) and I started having trouble breathing so I stopped it. He told me to hold on to it and we would try it again later and gave me about 3 scripts and samples. I didn't take any of them, threw them away and never went back. I wanted help and answers not over medicated.
Most of my doctors intertwine and I don't have any tests done without making sure that they all get the same report. I do keep a list of medications and I take it with me. But the doctors have all my health history and I guess I sort of depend on them for it. I should get a copy of my health records but I wouln't have any place to store all of them.
Sassie
I have had a red, flaky rash on my face for about 10 years, sometimes worse than others. Gets worse above my eyes if I use pink eyeshadow. Cannot wear foundation because it makes the flakiness a mess. Mineral powder works well though. When I went to the optho she wrote on my dx sheet Blepharitis Squamous, but did not mention that to me. she did mention sebaceous cyst on eyelid and told me to use warm compresses. I looked up Blepharitis and it talked about using dandriff shampoo compresses over the eye. Wonder if this would help the rash on the face as it looks the same as what is on my eye. Maybe I should see a dermatologist as well.
You must have been reading my mind as I was going to call a dermatologist. It seems that last few weeks my body just wants to sleep and sleep and by the time I mentally come awake, office hours are over. I am somehow messing up my sleep cycle and staying up late and sleeping in later.
I need to do something as it's now trough my scalp and it itches like crazy. I have some homemade soap that contains cocoanut and vitamin e oils and have been using that on my face a couple of times a day. It seems like it is helping a little but then tomorrow it could be all broke out in a bright red rash again.