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View Full Version : Lupus plus Rosacea???



Shantelle
10-14-2010, 04:38 PM
Hi there
I am currently being monitored for either DILE drug-induced lupus or onset SLE, however the Rheums team at my local hospital are leaning towards DILE from acne medication isotretinoin, which was shortly afterward stopping that then exasberated by a adverse reaction to minocycline antibiotic.
The Rheum team (2 people) and Derm team (2 people) can't figure out whether I have both Lupus or Rosacea, or just Lupus. My butterfly rash is very much in a butterfly shape, though not raised, and is very very sun sensitive, and burns like anything from sun exposure for hours and hours. However, I also get flushed especially from traditional Rosacea triggers like exercise, stress, hot temperature foods, alcohol, hot showers etc the redness isn't on the sides of my nose or where my nose touches my cheeks.
Now- the Plaquenil I have been on for 3 months now since testing postive ANA 1:640 speckled, and very raised ESR. It has helped greatley in almost every way such as hand symptoms/chillblains/red nail beds/swelling, less fatigue, slightly less base-redness in central face area, improved one of my toenails etc But i still get horrid flushing (particulary the nose area) when exposed to warm temps or traditional Rosacea triggers.
Can anyone shed some light? i.e. if you have Lupus is flushing never really an issue? if it isn't i wonder if i have both Lupus and Rosacea?? It is very confusing really...
I am very strict about sun protection lately though so won't be getting any more sun rashes/burning. I still get the flushing though no matter what.

Thanks in advance for anyone's help or thoughts...

Shantelle

Angel Oliver
10-15-2010, 05:32 AM
I so hope they find out for sure for you.Ive not been diagnosed...that fight continues with whatever i have,but i also get the rash but not raised,burns,but its very light on the face.I have weird rashes at the tops of both arms and back of both legs,neck n chest.Noone knows what they are and noone is checking either lol.In the sun my rashes do come out darker and more noticeable,but never raised,but also not like a normal rash.I did once hear a doctor mention the roscea but my last appointment with my rheumi he did actually say he could see the shape.Didnt do anything about it though lol.
Im sorry im not much help...but so hope they find out for sure with you what it is.
thinking of you
love
Amanda.xxxxxxxxx

Shantelle
10-15-2010, 08:52 PM
Yip Derm said definely both Rosacea and Lupus. Ahhhh. I'm going to see if i can stick it out with just the Plaquenil and Doxy but might have to get on Clonidine if the flushing continues for too much longer. As if one condition wasn't enough!

Shantelle
10-27-2010, 12:28 PM
Hi there

I have been thinking more about what my Derm said last week...

He said i have both Rosacea (flushing) and Lupus, but that in his opinion i have mild cutaneous lupus, not onset SLE or possible Drug-induced lupus (from Accutane/isotretinoin or minocycline) like the Rheum team at the hospital suggested to me in sept... although anti-histone antibodies were negative so i don't know how it could be DILE. So although i got some further insight i'm now looking at either/or 3 different sub-types of lupus. It is quite confusing actually. He said that the small pinkish patch with epidermal loss on my nose that i thought was a sort of dermatitis, is lupus, though it doesn't scar, it tries to re-heal but never does completely.

Can anyone advise how long it takes for Plaquenil 200mg a day to work on skin leisons? has anyone had any similar leison like this? would you suspect SCLE? i've been on Plaqueil 3.5 months now - is it usual for healing to take this long? I cannot have steroid creams as I have rosacea.

Many thanks for anyone's further insights and help

Shantelle

Dinosaur
11-05-2010, 10:37 PM
Shantelle, I have the same thing with those same activities/triggers... I'm not sure if it's just SLE or SLE + Rosacea. I also tend to flush more on the ride side of my face for some reason, and it also can feel a bit tingly. My skin tends to feel rough/dry after the flushing/rash has gone away... does that happen for you as well?

Shantelle
11-11-2010, 10:59 PM
Hi there Dinosaur
Yes my right cheeks flushes more often and severely than the left. Tingliness is also common when a flush i comming on, but i don't get a dry feeling as my skin is natrually a little oily/combo. It is different from the lupus butterfly rash i get from the sun which burns for hours and hours (i am very sun smart nowadays though now that i know i have lupus). My GP got me on Clonidine 25mcg 3x day every 8 hrs and it is having remarkable effect already on the Rosacea flushing. So i think because clonidine is working well that it confirms that lupus isn't acting alone, that i definetly have 2 conditions going on. So the Plaquenil and Clonidine combo is working well for me now and i'll be weaning off Doxycyline asap. Have you seen a dermatologist for an opinion on your flushing?