Sun exposure, first time I have been effected.

[joannebond360]

Hi. This is the first summer I have been effected by the sun! I love summer and holidays abroad, we didn't go away this year because of it, makes me ache and have fatigue and makes my joints worse. We are planning a holiday abroad next year though and instead of looking forward to it I am dreading it! Does anyone have any tips for being abroad? Can u sunbathe atall with sun creams on? Will the medicines we take for lupus help with some of the sensitivity?

[T3KAO]

Hi Joannebond360, I also am having the same problems in fact I had to phone my Lupus Nurse as my face and neck were so very painful. She asked if I had been out in the sun at all and had I had my Sunsense sunscreen on? We have been out to the states for the past 20 yrs but since my diagnosis 2 yrs ago haven't dared go because of the sun, we are planning to go next year but am also worried as to what reprocussions will come of the sun exposure. I would also be interested in what others have to say.

[joannebond360 in reply to T3KAO]

Hey. Thank you for your reply. It's all so confusing. Had two holidays last year and sunbathed all day everyday as I have always done and although I felt a bit drained towards the end of the holiday I was ok. I suppose all my symptoms have got worse the last year so it might explain it. So horrible! Can't imagine a holiday without being in the sun! Boohoo! And I wonder if I can just put my legs in the sun and not head and neck or is it all parts of the body to keep out of the sun?

[T3KAO in reply to joannebond360]

Hiya, my thoughts exactly if I just stick my legs in the sun it's all good. Face and other parts can fake tan!!!! LOL. My friend is speaking to a colleague from the states who researches on Lupus and is going to ask what sun protection they use. Will let you know. x

[joannebond360 in reply to T3KAO]

Haha, great minds think alike! Fake tan is my best friend this summer, lol. That would be really interesting, would love to know, thank you.

Jo x

[foxglove in reply to joannebond360]

Hi joannebond360, Neutrogena do a sun screen claimed to be SPF 100 which, though pricey, is vey effective, maybe if you've got sympathetic doc. he/she may prescribe?

[minniish in reply to T3KAO]

Hi, I have just read your comment I would also like to know about the protection they use. By any chance have u went to the state's when u have been diagnosed with lupus

[T3KAO in reply to minniish]

Hi minniish, I use SUNSENSE it was recommened by my Lupus Nurse it's SPF50+ and is available from your GP it's brilliant although do a skin test first. No I haven't been to the states since my diagnosis so I am quite apprehensive as to how I will cope!!!

[caninecrazy]

hi, this summer has been my worst for symtoms but ive put it down to the last two summers being rainy and not such intense periods of heat? I avoid sunshine as much as poss but always use my sunsense when I go out. I too put my legs (from knees down lol) in the sunshine as I want to "top up" my vitamin D levels etc and the suns warmth helps my knee and ankle joints. (yes im a little nutty hence my name! lol) x

[Muscatmandy]

I lived in France and my skin suffered less than in the UK. We were then posted to Oman in the middle east and I asked my French consultant if it was ok and he said it would probably be better than in France-I think it was something to do with the position of the sun. He was right and I spent 6 years walking on the beach in a bikini every day! I've been back in UK for two years now and my skin is a mess - the English sun is the worst (with the exception of Australia where there's no ozone layer).

[joannebond360]

Oh brilliant, thank you so much for that. Will have a look on there, sounds great.

Jo x

[Paula1968]

I have a spray tan before I go away every year so that I look like I've been, and I top it up with Dove whilst I'm there - works a treat.

You can get fantastic spray sun creams up to factor 100 from the states (on line). I first saw them when I went 2 years ago. they are so easy to apply. Other than that keep cool in the pool!!

I also cool my hands in ice on a daily basis that takes the tightness away.

[joannebond360 in reply to Paula1968]

Hey Paula.

Brilliant! Was thinking I might do the same when I go away. They are so natural looking.

[cloggy73]

Hi Jo

I'm with you and the others on getting a spray tan before heading on your holidays that way you are still tanned but less tempted to sit out in the full sun.Having lived in the sun most of my life I'm a sucker for it but I'm sure it has played a part in the Lupus. Initially after having been to India and other places in the far East on holiday before I was diagnosed I came out in terrible rashes had all the typical fatigue aches and pains but also suffered from seizures. The meds and docs and nhs have done a marvelous job but I still need to be vigilent. I love the warmth and the sun makes me smile Here's to getting tangoed!

Mx

[joannebond360 in reply to cloggy73]

Makes me so happy too! Is not the same sitting in the shade! Whole point of a holiday abroad for me is getting a sun tan! My mum says just think of saving your skin and wrinkles anyway, suppose she has a point but it makes me sad! Spray tans it is x

[lilliekinz]

I used to react terribly to the sun, and come out in horrendous rashes which was one of the main factors leading to my diagnosis. Since I have been diagnosed, my awareness has increased so I now wear factor 50 and don't lie out in the sun for too long (although I do try and push it a bit more each holiday!) since my diagnosis and being on medication, I haven't had a single reaction to the sun. My doctor also recommended that I take an antihistamine each day I am on holiday and for the week before my holiday. Enjoy the sunshine, but be careful, get plenty of shade and pack your fake tan! (At least we will be wrinkle free oldies!!) x

[joannebond360 in reply to lilliekinz]

The antihistamine is a good idea! Do you mind me asking what medicine you are on? So interested to hear what's working for people.

Just all takes a bit of getting used to, no sun. Used to bake in oil, haha! Yes wrinkle free is the positive side to it

Jo x

[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 dates.