I have recently developed a "butterfl... - Hughes Syndrome A...

Hughes Syndrome APS Forum

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I have recently developed a "butterfly rash".....looks like I have a bit too much blush

11 Replies

I will be seeing my Rheumatologist in 2 weeks.....but wondered if anyone else has developed this rash......Past blood tests have not revealed Lupus...only APS. Appreciate any comments

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11 Replies
MaryF profile image
MaryFAdministrator

Hi there, glad you are seeing the rheumatlologist, please take a photograph of this, in case it suddenly disappears before the appointment, which is the sort of things which happens to me! Keep us posted about what they say. Mary F x

racheldufficy profile image
racheldufficy

Hi there, the last time I got a butterfly rash was before my stroke. However I was not diagnosed with having APS. I did have it for about 4-5months though, so you should be fine. It is probably the APS starting to act up. I am glad that you are going to a rheumatlologist, they should give you a definitive answer. Like Mary F said keep us posted about what they say...

Jillymo profile image
Jillymo

Hello Rachel. I had a 'very' bad turn in 2011' & developed the butterfly rash it was over my cheeks & over the bridge of my nose.

It comes & goes but since that bad turn my skin has gone really dry together with my eyes....I now have to use drops to lubricate.

My skin is so dry that if i rest my hand on my chin i break out in a sore.

I have had two boarderline Lupus results ! My consultant emailed me yesterday with my latest results & it was negative......It seems Lupus is a hard one to diagnose.

I have suspected for many years that i could have Lupus due to my many symptoms.

At 'last' my consultant is listening to me.....What i did Rachel was take pictures of the rash & any other oddities that took place at least that way they cant say it's all in your head.

Just because your test has shown negative please dont let Lupus be pushed aside ask for random testing.

I know it is frustrating having to battle for answer's but battle we must....I am awaiting to see yet another rheumatologist but this one specialises in Lupus.

Fingers crossed we get some answers soon....Keep your chin up chick im thinking of you.

Kentish_Man profile image
Kentish_Man

I have both Lupus and Vasculitis. With this I get a Butterfly rash/redness over my face and 'panda' eyes. I also get a spotty rash over my forehead, down my arms and legs.

It may not be any thing, but best to get yourself checked out asap. Even if it is just to put your mind at rest.

in reply to Kentish_Man

thank you

Hilda_G profile image
Hilda_G

Years ago, I went to see my GP about something or other, but she thought I had gone to see her about the reddening on my face! She thought I might have rosacea and sent me to see a dermatologist, who took a quick look and said "photo sensitivity". I have the anti-ro antibody, and this is one of the side effects. I have APS, but not SLE.

in reply to Hilda_G

thankyou

lovemyheart profile image
lovemyheart

I have this for years. My son has it too. Hes nineteen and has rheumatoid arthritis and raynauds

thank you all.....thankfully my rash is not apparent to others.........I see it because I'm so pale.....I trust my Rheumy.....she does a complete battery of tests including markers for

"inflammation" so I trust her....in addition to APS she has diagnosed me with Unspecified

Mixed Connective Disorder

DataOdyssey profile image
DataOdyssey

I have this same rash too several times a year. Sometimes it's pretty bad, and it even spreads to the bridge of my nose. The fact that I have dark skin and I find ways to clean up the rash every morning means most people will never notice it. But when I wake up first thing in the morning, it's sometimes very visible and makes my face look awful. On some days, half way through the day it becomes visible again. I'm glad your Rheumatologist is doing something about it.

I'm sorry to hear your rash get bad....I am fortunate....I just look like I have a bit too much blush.....but I a concerned that the rash is symptomatic of "inflammation" in other parts of system

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