Butterfly rash/mark

[Suecon]

For those of you with a butterfly rash, do you find it's stronger or more noticeable when you are warm?

Thanx x

[nanleighh]

For me warm, cold, hot the rash stays the same. People do tend to flush in the checks when warm. That's the bodies natural reaction to overheating or fever. That being said, it does tend to worsen with sun exposure or if I am having a flare with accompanied fatigue and joint issues. Everyone is different and not everyone with lupus has a butterfly rash. I hope you get it all figured out. ❤️☘🙏🏻

[Suecon in reply to nanleighh]

Thank u. I'm not so good today. The burning smwll is driving me bonkers too

[Nikki246]

I get the rash on my face and my left wrist. The more exhusted I get the brighter the rashes, but if I'm out in the sun it does get worse but so do all my symptoms, joint pain, skin on the palms of my hands split and peal off and muscle weakness.

[Suecon in reply to Nikki246]

I seem to be having a flare. Terrible rashes on my shins and wrists and I feel very unwell. The butterfly rash is mych brighter too. Thanx x

[Cas70]

Yes, it's awful! Can't drink in public and if I get stressed I look ridiculous.

[Suecon in reply to Cas70]

Have u tried camouflage makeup? I haven't but mine isn't as bright as some I've seen

[Cas70]

I finally found a brand especially for older women and it is fabulous - there s a great place I was recommended but no need now- don't EVER use the green stuff - awful ! Now if I could get my hair back the way it was ! Thanks for the reply - Cas

[Suecon in reply to Cas70]

Fabulous. Are u in the UK? I did indeed try the green stuff. And the yellow 😏

[Cas70 in reply to Suecon]

Yes I am in U.K. - read your post about non diagnosis. That is common - my Consultant kept calling it an immune system malfunction even after a scalp biopsy. Dermatologists (2) told me what is was - Discoid Lupus with Sjogrens. Hence my skin being very dry and blotchy and hair loss plus very dry mouth and eyes. Had to find my own remedies although Hydroxychloroquine helps fantastically.

[Suecon in reply to Cas70]

Is that the makeup u use? I think I'm being referred to a dermatologist as I have so many skin problems. I thought only systemic lupus caused a butterfly rash? Thank u so much for replying. Oh, do u get stomach pains or bellyache diring a flare?

[Cas70 in reply to Suecon]

No sorry, Hydroxychloroquine is the drug they use to keep Discoid or Systemic or Sjogrens under control. I have a butterfly rash- there are so many symptoms it all blurs now as I have Sjogrens too. The make up I use is Look Fabulous Forever - but there is also Brit Assoc of Skin Camouflage- both on line. Gives me confidence when I go out that I won't look too odd!

[Suecon in reply to Cas70]

I'm sure it does and it's great that there is something now, other than the old heavy panstick. Do u have red eyelids? My eyelids have been very red for a long time. It looks like I'm wearing makeup

[Cas70 in reply to Suecon]

Sorry just saw this question. Yes eyelids are rosy to say the least ! I use a concealer on them. I must say my overall appearance caused by Lupus/Sjogrens (without make up) is that of a hard drinker !! I suppose the blue nose will come later - hey ho !

[Suecon in reply to Cas70]

Lol. Thanks for replying. Is it lupus that makes your eyelids red, or the sjogrens?

[Cas70 in reply to Suecon]

I think the Sjogrens but my skin is awful now all over -which is Lupus. Am so grateful for this site. Just wish I could find a Doc or clinic to be monitored. Feel cast adrift by Consultant and Rheumy who have discharged me back to a practice run by 90% locums.

[Suecon in reply to Cas70]

That's terrible. Youbwon't monitored at all? I don't have any of the symptoms of sjogrens, apart from the red eyelids but I do have terrible rashes on my legs and one wrist. I think I'm getting some on my scalp now too. I won't get any help until I get a diagnosis. Do u get hallucinations?

[Cas70 in reply to Suecon]

No hallucinations thank goodness - how awful - what causes those? Report the rashes,especially the scalp and don't scratchscalp - very important not to break the skin. How long have you been trying for diagnosis? What part of country you in?

[Suecon in reply to Cas70]

Hi. I'm in Liverpool. I've been trying since the beginning of the year but only saw a rheumy last month. The scalp one isn't itchy really. I could rip my legs off tho. I'm having another couch day as the tiredness and pains are unreal. Does lupus cause chestiness? My airways have been sore for about 2 months, tho it's not painful to take a deep breath

[misty14]

Hi Suecon

Sorry to read you are flaring. My butterfly rash can be very hot and be more pronounced when I'm warm!. Can you get your treatment adjusted to help the flare?. Hope your better soon. X

[Suecon in reply to misty14]

I've been told that because my blood tests are fine that I don't have lupus. Despite many of the symptoms and my conviction that I do. I believe this is quite common tho. Thanx for replying x

[misty14 in reply to Suecon]

Hi Suecon

It is possible to have lupus with negative bloods, they must look at symptoms too!. It also depends how open minded the Consultant is!. Have you thought of seeing a different Rheumy?. X

[Suecon in reply to misty14]

My rheumy dismissed all my symptoms because the tests were clear. I did email and mssge Fabienne for the list of good doctors in my area - Liverpool - but I've not heard back.

Thanx for replying

[misty14 in reply to Suecon]

Hi Suecon

Message Paul Howard for the info. He's very good at replying. X

[Suecon in reply to misty14]

Will do. Thank u x

[Paul_Howard Partner LUPUS UK in reply to Suecon]

Hi Suecon ,

Unfortunately Fabienne has been unwell, so hasn't been in the office. I'm sorry that you weren't able to get a response yet.

I don't know of any NHS lupus specialists in the Liverpool area unfortunately. The Kellgren Centre at Manchester Royal Infirmary may be your closest specialist centre - it is actually a LUPUS UK Centre of Excellence. A couple of the consultants there are Prof Ian Bruce and Dr Ben Parker.

There may still be some good lupus doctors in the Liverpool area. You could try contacting our North West Lupus Group to see if they have any recommendations? You can contact them through their website at northwestlupus.org.uk/

[stacieann1989]

hiya. Yes, both warm and cold weather make my rash more visible. It's always slightly there, like a blush. A few weeks ago I went to a spa with my friends and when we came out of the sauna it was ridiculously visible. Now with the cold weather, it's showing itself more than usual. Hope this helps. x

[Suecon in reply to stacieann1989]

Thank u. Do u think it's more noticeable in winter because ur paler? Mine is always there too, but more noticeable at times

[stacieann1989 in reply to Suecon]

Yes, my paleness probably has a lot to do with how visible it is haha. But, even if I use foundation, it will always come through if I'm out in the cold or too hot. x

[Suecon in reply to stacieann1989]

Thanks. I always think I've covered mine well but within hald an hour it's sbowing thru again x

[stacieann1989 in reply to Suecon]

My theory is to just rock it and own the butterfly! <3