Butterfly rash and Rheumatoid Arthritis: When I first... - NRAS

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Butterfly rash and Rheumatoid Arthritis

rosie1928
rosie1928
27 Replies

When I first got RA, 23 years ago I also knew when it was time to go to bed when I got a "butterfly rash". Its a term used to describe redness of the cheeks and even nose. My face used to burn and I felt feverish. I was surprised the other night when i glanced in the mirror to see I had the rash. I had really overdone it that day. It has been a while since I had been so red with tiredness in the face. I use it as an indication that a flareup is on its way.

What are the experiences of others? Hope this helps the newbies.

Rosie (literally!)

27 Replies
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Barrister

A butterfly rash is usually an indication of Lupus. It can be drug induced. Next time you have it, take some pictures and discuss it with your rheumatologist. I get facial burning and redness but that is usually when rosacea flares and it isn’t a butterfly shape. Clemmie

4 likes
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rosie1928
rosie1928
in reply to Barrister

Thanks Clemmie

Will follow that up

Rosie

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Christophene47

Or it could be a cross over symptom where the various AI symptoms can cross over into what we think is "our" disease.

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Kai--

Just in case you join the ranks of beloved, rosy-cheeked (🦋 😊) 'Lupies', rosie1928 (🌹-ie 1928) — or are merely curious 🤔 about Lupus — these references may help:

Dr. Brooke Goldner's Free 3-Day Webinar, '6 Steps to Reversing Autoimmune Disease with Supermarket Foods': August 3/Thu, 7/Mon, 10/Thu 2017: healthunlocked.com/cure-art...

Lupus UK forum: healthunlocked.com/lupusuk

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Wishing you the very best, 🌹-ie 1928. 🙏 🍀 🌺 🌞

.

2 likes
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rosie1928
rosie1928
in reply to Kai--

thanks for that Kai. You know I remember something one of my GP's said to me years ago that she didnt think I had RA but something else. There was a pregnant silence and she said no more. I was much younger and didnt want to waste her time but how I wish i had. Maybe I have been misdiagnosed. I am seeing my specialist in Feb so will ask for a review.

I am older now and much more curious..... so onwards and upwards.... I will pursue.....

You are always so helpful and I appreciate it.

Rosie

1 like
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Kai--
Kai--
in reply to rosie1928

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Very welcome, 🌹-ie 1928. 🙏 😌

Think sometimes our beloved physicians 👩‍⚕️👨‍⚕️ are hesitant to 'speculate'/ 'think aloud' 🤔 💭 💬 in front of us for fear they'll (unnecessarily) 'scare the bejesus out of us' 😨 — especially when we're young & have our whole life ahead of us. 👶 👧 👱‍♀️ 👵

Very understandable. 😌 🙏

Sometimes (I think) getting a fuller picture 🖼 of 'the possibilities' allows us to participate in understanding/ 'figuring out' what ails us — provided we're of a disposition to thoughtfully 🤔, calmly 😑 , logically 🔢 do so.

Yes, yes . . . think as we get a few more years under our belt (especially after living 'in disease'), we get a bit more curious & begin to actively pursue 🕵️‍♀️ 🔎 answers — especially if things aren't going 'as hoped' . . . 😳

Sometimes our 'inner voice' 🗣 💬 has a deep, quiet wisdom 😌 , that gently nudges us toward answers? 🤔

Hope you discover solutions that work well for you, 🌹-ie 1928.

[Sometimes, no matter what ailment category/ label 🏷 🔖 we're 'lumped under', the solutions are surprisingly 'the same'/ similar: lovingly nourishing our bodies 🥗 , increasing movement 🚶🏊‍♀️ (as best we can), reducing stressors 😖, restoring mental well-being 😊 through practice of better/ calmer thinking/ thoughts 😑 . . . ]

Many, many 'little things' 💧💧💧 cumulatively resulting in 'a bigger thing' 🌊 .

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🙏 🍀 🌺 🌞

.

1 like
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Kikideelili

Hi Rosie

I get the butterfly rash when I am tired too. I have had drug induced lupus but it’s gone now.

I do have rosacea too and have seen a specialist dermatologist who confirmed the rash is rosacea and not lupus. I also get the rash when I eat foods high in histamine.

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rosie1928

Thanks Kiki

I was saying to Kai that I wonder if I have been misdiagnosed. All I know is that the butterfly rash came back and I am in a flareup. I have photos of myself when my grandson was born .... and I was so red that I am sure one could have fried an egg on my cheek!!

Warm (pun not intended) regards

Rosie

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Kikideelili

Yes I get the hot cheeks too when I drink alcohol ( very rare) and eat pork, salmon etc drink coffee all high histamine

Mention it to rheumatology.

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wishbone

I also have Roseacia, which is currently the calmest it's been for ages - same goes for my RA. My rosacea eases but never clears up and can get rather nasty to put it mildly, with a butterfly effect rash on face plus painful weeping pustules and spots, which also occur on scalp, forehead, neck, back, and chest. The sodding things can take weeks, occasionally months to heal properly. Definite link with my RA as indicated in my first sentence. If one flares then the other's sure to follow. Treatment doesn't seem to help much.

1 like
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rosie1928
rosie1928
in reply to wishbone

I should count my blessings! I have never had rash that bad. Mine is just like you get with the flu and it goes ruby red. I realise that I am in a flare up....but it has t aken me days to realise that! I have been tired and dizzy and sore. I am just a slow learner! Or in denial. Which is a common trait for sufferers of RA and similiar diseases. Sometimes we can be our own worst enemy.

Sorry to hear you have so much trouble with the rash. I do have a lot of broken capillaries as my face as a result.

Warm regards

Rosie

3 likes
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wishbone
wishbone
in reply to rosie1928

I think there's different strains of rosacea. I saw a TV programme a while back where a young man, and I believe it's mostly males that get the bad strains, had awful rosacea mainly on his scalp, which caused him to have really low self esteem. He did manage to get get a marked improvement to the condition via a rather uncomfortable course of treatment dished out by an expensive Harley Street dermatologist, obviously funded by the TV channel.

I'm too old to have a low self esteem - I know I'm extremely good looking despite this god darned rosacea and that's that! ;-) No problem with broken capillaries - guess that's something to be thankful for.

take care

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Kai--
Kai--
in reply to wishbone

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". . . I know I'm extremely good looking despite this god darned rosacea and that's that! . . ."

[One of the funniest things I've read. 😂 😂 Thank you kindly for the hearty laugh, wishbone. 😌 🙏 ]

No doubt it's true — you're brimming with handsomeness and high self-esteem . . . ☺️ 👍👍

.

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wishbone
wishbone
in reply to Kai--

My pleasure, and thanks for the compliments. ;-)

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Christophene47

Be proud of your good looks and that your self esteem has not been impaired. I am, for a 72 year old, pretty good looking, but my confidence has plummeted. We have to hold on to those things that make us feel good about ourselves.

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Kai--
Kai--
in reply to wishbone

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Hmmm . . . got me wondering. . . 🤔 Should we be requesting "photographic evidence" 📷 👤 of this 'good-looking-ness', wishbone? 🤔

After all, this is an 'evidence-based' site requiring "proof, proof, proof . . . " (as some would chantingly insist). 😯 [Early photos from school days 👨‍🎓 , service 💂 , or police (mugshots) 🤦‍♂️ . . . wouldn't be admissible. 😬 ]

Maybe more recent date-stamped photos 📆 👤 would be acceptable? (Perhaps, something like a kidnapee/ hostage holding a daily newspaper 👤 👉 📰 .) 🤔

Gawd knows with advancing age 👵 👴 (& eyes 👁👁 ), we may mistake any hint of rosacea (🌹) as the 'blush of youth' . . . ☺️ 👱

Suspect any written testimonials 📝 declaring 'handsomeness'🤵 would be discounted as mere 'anecdote'/ hearsay, therefore dismissed out-of-hand 💁 in this 'fact-finding' forum of truth-seeking. 👨‍⚖️ ⚖️ 👩‍⚖️

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🙏 😁 giphy.com/gifs/m8n0G0d58ZNF...

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🎄 🔖 🎁 🎅 ❄️ ☃️ 🌨

.

4 likes
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wishbone
wishbone
in reply to Kai--

Haha...no chance of any photos...you're going to have to take my word that I look like an ageing Johnny Depp. :-)

Enjoyed that young to old photo thing.

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rosie1928
rosie1928
in reply to wishbone

It was my vanity that motivated me. I was worried that the Rosie1928 might indicate my true age!! 1928 was the year my mother was born. LOL

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rosie1928
rosie1928
in reply to Kai--

Baby photos are the ultimate! All babies are beautiful!

1 like
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Kai--
Kai--
in reply to rosie1928
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rosie1928
rosie1928
in reply to Kai--

Babies and cats! From one cat lover to another... I loved the videos.

1 like
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cheshcat

I get the same thing. I have Rosacea. If my RA flares, my Rosacea flares too. It also gets bad if I’m tired or stressed. If I feel awful, it shows on my face. I have been looked at by a dermatologist that said it is Rosacea. However, I think there is a lot of over lap between all the auto immune diseases.

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Christophene47

Yes, yes and yes. Many of us experience crossover symptoms, always casting doubt on the medically given diagnosis. These diseases cannot be looked at in isolation. There are many grey spots under the umbrella of vasculitic diseases. Very confusing to patients and to physicians as well.

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Jules13

Omg. I thought it was just me!!! I’ve had flare ups when I’ve overdone it and the next day am ruddy cheeked and I feel like I’m overheating. It’s the inflammation I guess. But I will now keep an eye on it because it is a good sign to then take it easy. X

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rosie1928
rosie1928
in reply to Jules13

Ruddy cheeked is a good way of putting it. Embarrassing when one is out. It looks like one has had one too many!

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calamityjane1971

I get a red rash on my face over my nose and cheeks when I get a flare up. I have been tested twice for Lupus which was negative so I put it down to just one of those that’s an indicator of a flare of my RA along with night sweats.

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