First sun holiday with lupus tumidus/Sjorgens

[Dressgirl52]

I have just returned from a ‘rolled over’ holiday ie booked before my diagnosis , so was apprehensive ! Trying to be positive I researched the best sun protection etc taking la Roche-posay and ultrasun - which were excellent .

I have always loved my sun holidays , anyway working things out I sat in the sun during the mornings mostly which worked well and then tried to stay out of it until late afternoon .

It worked well until the last day which was incredibly hot and my neck flared up with bumpy rash - but on the positive side it was a test to see how my skin reacted in my first summer sun with this diagnosis .

The only medication I am on at the moment is prednisone - I am being weaned off it as I hate being on this - think hydrocloxy is the next step ….

I find it all quite upsetting when your normal life is changed but finding what works for you is a positive step as it can get me down some days. 😊

[Whippet_lady]

That's very positive, that you managed a sunny holiday without too much in the way of effects. I know what you mean about suddenly having your life changed but I'm glad you're finding solutions. Go you!

[Fighting]

I usually keep myself covered in the sun. I wear a hat and cotton long sleeves. The hydroxychloroquine has messed up my eyes. I am now on a new medication to keep the lupus in check. My bones are a mess and the doctor is now trying to put me on Prolea. Good luck to you.

[Jaxbosssnoop]

Hello there, l have a holiday coming up in October to Jamaica I’m so worried about it ! Reading your post has helped me though, but if you don’t mind me asking- what meds did Derm/doc put you on for while you was on holiday? I’m wondering if there is anything I could ask for to take during my trip incase of skin rash (currently covered in one now) and on predisilone thanks xx

[Dressgirl52 in reply to Jaxbosssnoop]

Hi there - I am on prednisone the same as you - but used la Roche posay suncare which was amazing ! I was careful ably times of day in sun as well - fingers crossed all will be well xx