Malar Rash

[Bajalala]

Here's a question, is it true that a malar rash should not come and go but rather stays on your face for a certain length of time; weeks? I keep getting this rash but it comes and goes on a daily basis. Has anyone ever experienced this?

[misty14]

Hi Bajala

I too get the malar rash and it comes and goes according to whether I'm flaring or not. Usually comes on after 6 pm as that's inflammation time!. Hope that answers your question. X

[Bajalala in reply to misty14]

Hi misty, thank you so much for answering this for me. I'm getting conflicting info online but it's much better to get it directly from lupus sufferers, so thanks again for sharing.

These rashes come on in the evening too & now my ears are getting red & hot...strange 🤔

[misty14 in reply to Bajalala]

Hi Bajala, so glad I've helped. You've made me think now and my ears also burn at the same time!. Hadn't realised. Could your lupus treatment be adjusted to take account of your flare?. Hope your better soon. X

[Bajalala in reply to misty14]

I'm actually in the process of getting diagnosed. My GP felt it was Lupus based on all my symptoms but my blood work is negative except an elevated ESR. The rheumy I recently saw was dismissive and had no interest because of my labs. I'm going to another rheumy for a second opinion and at least be treated like someone cares. I feel like I may just be crazy and stop whining. 😣

[misty14 in reply to Bajalala]

Hi Bajala

It is possible to be diagnosed with sero negative lupus with negative bloods but you need an enlightened Rheumy that hopefully will be this second one your going to!. There's something going on as your ESR is raised. Good luck and your so right to keep fighting. Let us know how you get on. X

[Bajalala in reply to misty14]

Thanks much! I've been in tears out of frustration and the encouragement I get here is like no other 😊🤗👋🏽

[misty14 in reply to Bajalala]

That's lovely Bajala. When do you see second Rheumy?. Hope it's soon. Fingers crossed for you. X

[Bajalala in reply to misty14]

It should be in about 2-3 weeks as I'm leaving on vacay to visit my parents in hot sunny Texas. Will wear sunblockfor sure. Or maybe I should go without to see if I get a sun induced rash to show the doc? What'll prob happen is I'll just feel terrible with pain hahaha

Take care 🤗

Elena

[misty14 in reply to Bajalala]

Have a lovely time and take care. You could see if sun affects you and take photos if it does!. X

[soootired]

For me it's the same as misty, my butterfly rash comes on from either being in the sun, certain UV lights or being tired/flaring.

My ears sometimes get hot too!

[Bajalala in reply to soootired]

Well that's good to hea that others experienc this as well because the red ears was so strange. As I'm getting this rash more and more, I'm noticing that's it's redder every time and tingly. Gets even redder when I'm in front of my makeup mirror.

[1sam]

Mine fades in the mornings, then gets worst while I'm driving around 1pm, even when the sun is not bright and wearing SPF 50.

It comes and goes at its own will.

[Bajalala in reply to 1sam]

It's so interesting to see how very diff everyone's rashes are and how they manifest.

[Shaysuekirk]

Definitely comes and goes. Mine comes out with a flare or if I've been in the heat. You can even very faintly see it when I get out of a hot shower.

[Bajalala in reply to Shaysuekirk]

Now that you mention it, I be noticed that it's faintly there when I get out of a hot shower but it had never registered.

[cuttysark]

Mine appears in the evening after seven ,and also first thing in the morning.

It is much worse if I am in a general flare when it might stay all day and become very hot and sore but never itchy. Right cheek always worse than the left.

I have photographed it at it's worst and Rheumy was always interested as was GP.

I have generally negative bloods so any symptoms like that are important and at least visual proof that something is going on!

[Bajalala in reply to cuttysark]

Yes! In hindsight, I've noticed that it's always been coming & going (very faint) but I chalked it up to hormones, thyroid or just blushing. Now that I'm in a flare (my first) it's much more red & hot to the touch. My right cheek is always worse which I was told by a rheumy I just saw that the rash isn't like that. That it's only the "classic" butterfly rash that we all see advertised on both sides & across nose. Aside from that she was very disinterested in finding out what is wrong with me because my labs were negative aside from an elevated ESR. I came out of there crying & very discouraged. I could tell her eyes were glazing over as I told her all my symptoms and that they've all come on within the last 6 months to a year. She said she thinks they are all unrelated?!? I'm going to another rheumy soon so we'll see what happens.

...frustrated to say the least 😞😣

[ijeasike]

I too used to have it appear especially in the evening and my face gets red hot. But since December last year i have it till today. my malar rash at a point made my cheeks look as if i was stung by a bee (swollen and bright red). Then my Rheaumy suggested i start using sun cream. It sounded absurd to use sunscreen in winter but he told me that light bulbs could cause the same damage as the sun. I did send a post asking for the best light bulbs to use when you have photosensitivity.

I use spf 100+ neutrogena bcos the 50+ doesn't work for me during summer so someone suggested in this sight, that i tried 100+. I got three lotions so they came in handy this winter.

Get a sunscreen and if u can avoid direct contact to light. I practical hide from the light, so apply my sunscreen b4 i turn my lightbulb on. I hope u get better. Take care and God bless.

Regards

Ijeasike

[Bajalala in reply to ijeasike]

You've given me a lot to think about. I didn't really give much thought to changing my light bulbs or wearing sunscreen in the winter. Although I hardly go out lately since I am so sick. I wonder if the light from my iPhone can affect it since I'm on it practically 24/7 researching. Thank you you for your kind words 😊🤗 I hope all goes well for you too! 👋🏽

[flossy1 in reply to Bajalala]

Just picking up the point you made re the light from your iPhone. I definitely flare if I spend too much time on mine and same with my iPad. I don't know whether you have Sjrogrens or not, but using phone or iPad seems to burn my eyes too. So for me limited use of phone, iPad and kindle. x

[Bajalala in reply to flossy1]

I have not been diagnosed with sjrogrens...but do have dry eyes. Thankfully I haven't noticed them burning. Boy that must be difficult with as much as we all use our devices. You know they have a special screen for that purpose. So as not to get dangerous levels of blue light I believe it is.

[Dinasamir]

Hi ladies, if you're not diagnosed with lupus then your rash might be Rosacea. I was diagnosed with rosacea 5 months ago. I have 1:160 ANA test, but all my other blood test are negative. I read that 53% of Roasacea patients have positive ANA. I don't know if it will help or not but i think you can put it in mind. Good luck

[Bajalala in reply to Dinasamir]

Hi Dinasamir 👋🏽

Thanks for the info. I'll have to look up rosacea and compare. I do believe though that with rosacea you get some kind of breakouts too? Like acne, or am I wrong?

[Dinasamir in reply to Bajalala]

Not always, it starts with rash similar to malar rash. Sometimes it develops acne, spicy food , heat, sun exposure and caffeine are the most common triggers.

[cuttysark]

My husband gets rosacea but his definitely responds to alcohol, heat, caffeine etc whereas mine comes on when my joints start to ache and I feel fluey.

What I did notice is that with mine it is restricted to the actual cheeks not going up to the skin at the edge of the nose ie between nostrils and cheeks. That bit is quite unaffected which seems to suggest more a malar rash.

I am totally sympathetic as to how you are feeling just now. I have been similar with only higher ESR , but so many different symptoms. I eventually found a Rheumy who accepted I did have a Sjogrens or Lupus like illness so have had steroids for the last five years but cant tolerate the hydroxichloroquine . They tried me with that first.

Keep trying a different Rheumy and ask as many folk in your area for suggestions of whom to see.

All the best x

[Bajalala in reply to cuttysark]

Thank you 😊

I'm always second guessing myself especially now that things have settled down a bit and I'm not in horrible pain. I'm sure many "new in the game" as myself go through this until we get some someone to believe us or care enough to look into it. So glad I've discovered this forum, saves me from despairing at times 😊😁

Hugs 🤗

[Nikki246]

I get a flushed face (malar rash) but I also get a rash on my left wrist (it's my left side I get most of my pain) they both come and go depending how I feel.

[Bajalala in reply to Nikki246]

Thanks for sharing that Nikki, I'm learning so much from everyone's comments!

[Chanpreet_Walia LUPUS UK]

Hi Bajalala,

Have you spoken to your doctor or rheumatologist about this?

According to The Lupus Encyclopaedia, the rash of acute cutaneous lupus which includes the ‘malar rash’ can “last a few hours, a few weeks or sometimes longer”.

It is important to bear in mind that lupus presents differently in everybody therefore, it is unlikely for two people to share the exact same experience. It is possible for people to experience periods of remission where their lupus is controlled and they feel relatively better; reducing the signs of their symptoms.

Wishing you all the best, let us know how you get on.

[Bajalala in reply to Chanpreet_Walia]

Hi Chanpreet and thanks. I have been to my first rheumy visit and it didn't go as well as I wished. She was kind enough but very dismissive as my bloods were negative. I didn't have the rash at the appt so she did proceed to look at my face and tell tell me that my skin looks fine and why am I worried. Really?!? I just got done telling you that I currently didn't have the rash 😳 She told me well, I don't think you have Lupus because for one, my Lupus patients are extremely sick. Made me feel as if I'm just a hypochondriac who's looking for attn. I'm sorry, as you can tell, I'm slightly disheartened. I am going to another rheumy that a friend rec to me so we'll see. I was initially under the impression that it did come and go but her tactics made me second guess myself and as I'm new to all this and reading about all the aspects of this illnesss, I can't remember everything.

[Bajalala in reply to Chanpreet_Walia]

Hi again, I hope my response didn't scare you away 😳 Sorry, if I made you uncomfortable, I was very emotional over feeling terrible and not finding any answers as I hoped.

[Chanpreet_Walia LUPUS UK in reply to Bajalala]

Hi Bajalala,

Sorry for not getting back to you sooner, I am in the office on a part-time basis therefore; I am unable to check my HealthUnlocked messages every day.

I am glad you are going to visit a different rheumatologist; I hope the appointment goes better than your previous experience. If you have already had it, how did it go?

Lupus flares tend to fluctuate and can be brought on due to light sensitivity. We published a guide called ‘Lupus and the Skin’ which I hope will be of help to you: lupusuk.org.uk/wp-content/u.... If you have not had your rheumatologist appointment just yet, you may want to take this guide along with you in order to aid you in explaining your symptoms.

[Bajalala in reply to Chanpreet_Walia]

Hi Chanpreet, thanks for the tips & link. I will def have it with me when I go to the 2nd rheumatologist. 👋🏽

[Karm]

Mine came and went in the beginning. And then after a few years it has stayed. I think everyone is so different.

[Bajalala in reply to Karm]

Thanks for sharing that Karm, I appreciate getting everyone's input and learning more and more.

[Charliebear68]

Hi,

I seriously could weep at finding this forum - thank you for all the honest opinions, I feel at last that I'm not going doolally.

I'm so tired today that I can't get off the sofa, only for loo breaks!

Been having symptoms for over 10 years, was diagnosed as having CFS.

Advised to eat GF diet, initially helped greatly but not sure if it was a coincidence now.

Haven't eaten gluten for over 5 years but have had 'episodes' of flu-like illness on and off for years. Was tested for coeliac but negative.

I've had more bloods taken over the years with varying degrees of positives and negatives at different times but the past month I have been dreadful. Fatigue like I've never known; pain in my feet, wrists and knees; stiff fingers, brain fog...and so much more.

At my surgery I never see the same GP but last time I saw a locum who said that my facial rash could be a malar one. I have seen a dermatologist and he ordered lots of bloods and I'm waiting on these tests.

I see the main GP tomorrow and will hopefully get some answers but I am so scared, what if it isn't then what is it? I've been down this road before and I cannot face the thought of going through all the tests again.

Reading the comments and all the advice makes me feel like I'm not alone on this awful journey.

I thank you all for your time and I apologise for the garbled way I've put this out there.

Charlie x

[Bajalala]

I know exactly how you feel Charlie. Sadly I'm seeing for many that it takes years to get diagnosed. I'm also learning that some have "Lupus like" illness or "pre Lupus" But I'm learning so much just from this website. Wether I ever get a diagnosis or not, I now know what to do to stave a flare. What diet may or may not be best for me. I'm going to work on building up my immune system and healing my gut, which makes a huge difference in your immune system. I hope you get some definitive answers from your upcoming visit. Please keep us posted, I in particular would like to know what you find out.

Btw, you made perfect sense 😉 Now hopefully, mine makes sense 😂

Take care & all the best!

Elena

[Dessaboo]

I keep ending up at these boards!!! *lol*

I started with Malar rash about 2 years ago, had bloodwork done up for lupus came back negative... I do have nonspecific symptoms off and on-- fatigue, aches and pains etc...

Doc said it was likely rosacea.

Fast forward to Jan of 2018. Full on shawl rash, V sign, and muscle weakness consistant with DERMATOMYOSITIS. (Raised CK levels, but no ANA markers or antibodies or whatever they looked for.

So doc prescribes pred, and refers me to internal medicine. By the time I get the appt, nearly 5 weeks have passed, I am on the mend or at least far better than what I was at the beginning.

Long story short internist isht convinced of dermatomyositis dx. So I tapered pred, even though not feeling "better"

And now I am back to Malar rashes, every evening about 6-7pm. Did a search and now I'm back on the lupus boards *lol*

Just thought me and my fiery face would say hi!