Sun exposure: I hope you don't mind but... - Hughes Syndrome A...

Hughes Syndrome APS Forum

10,397 members10,602 posts

Sun exposure

lornaeloise profile image
8 Replies

I hope you don't mind but I have a question, any help appreciated. I have APS but tests for Lupus such as ANA always come back negative. But every time I am in direct sunlight I get a burning sensation on my face with a non itchy rash that can last for hours. Some times this is accompanied with a horrible headache or general feeling of being shaky and heart racing. I always wear sunscreen. Anyone had anything similar?

Written by
lornaeloise profile image
lornaeloise
To view profiles and participate in discussions please or .
8 Replies
Lure2 profile image
Lure2

Before I started warfarin I could not stand Sunlight. The light was too much and I also had problems with my eyes.

My Rheumatologist says we can have pieces of SLE sometimes. I have been told I have primary APS.

Are you enough and well anticoagulated?

Best wishes from Kerstin in Stockholm

CharH profile image
CharH

I have exactly the same issue. As it only lasts hours i have taken photos to show my consultant in August. My APS was diagnosed after miscarriage so am not on Warf etc... Am very new to all this so will be interested in any other replies you get?!

GinaD profile image
GinaD

I used to have this problem -- back in my 20s when I also had recurring bouts of mono, aka glandular fever. Thankfully I outgrew those problems. My ANA still fluctuates between positive and negative.

my face becomes flushed and red on cheeks...looks like I am blushing or had too much to drink....this happens when my face gets warm....not only sunlight...but

sleeping...drying my hair w/ electric dryer....or simply getting overheated....

I do not have the pale complexion one associates with 'rosy cheeks or blushing'

so I am worried.....ice usually calms it down

TreyBon64 profile image
TreyBon64

I have APS and have been put on hydroxychloriquine (placquinel), amongst other medication. One of the side effects of hydroxychloriquine is going red in the sun. I have to cover my arms, chest, wear a sun hat and have a parasol. Many A time I can't be bothered and I pay the price by looking like a red tomato. Not cool ... and yes I even use sunscreen.

jetjetjet profile image
jetjetjet in reply to TreyBon64

My Dc's say NO direct sun as it can thicken my blood

Ozchick profile image
Ozchick

I have stopped Plaquenil after nearly 4 months as it wasn't making any difference to me. One if the side effects was being sun sensitive-bit hard when I Iive in a sunny climate! If i forgot the sunscreen I would get rashes on exposed bits and feel a bit flushed.

AngelinaN profile image
AngelinaN

I take piriton tablets daily for two whole weeks before a holiday and daily when there. I also have to wear 8-15 sunscreen - but it works for me. Don't sunbathe but I walkmiles and swim like a fish and end up with lovely healthy colour and no rash or blister or flushing...worth a try

Not what you're looking for?

You may also like...

Sun Sensitivity

Los Angeles has been in a extreme heat wave the last few weeks. I have been out in the sun the...

Fibromyalgia

Hi, over the past 8 months i have had severe joint problems, which i put down to hard graft at...

Do you have an odd sleep/wake cycle?

I know we are all more than tired and often have a level of fatigue that is hard for others to...

Apologies for my absence :(

Hi everyone. I'm so sorry I've not been about as much as I used to. I've just been rather busy...

Memory improvement on warfarin

I was only diagnosed with Hughes syndrome a couple of months ago by a Stroke Consultant and have...