Advice please on effects of sun

[Georgie-girl]

Hello all my wonderful forum friends. I hope life is being kind to you all.

I know a lot of you have sun sensitivity issues and I'm hoping you can give me some advice and answer some questions for me.

I haven't had problems in the sun before apart from the last year or so where it has often given me a headache. I put it down to squinting from the brightness. However, after a recent short break to Dorset, I am now suffering.

Having had several weeks of good health, feeling great and very few problems, I was thoroughly enjoying life, then bang. The day after I arrive home from holiday my stomach issues start to flair. Then the dizziness reappears, the eye pains, sweating and shakes, tinnitus, blurred vision, swallowing issues, congestion and dryness, stabbing shooting nerve pains, breathing problems etc etc all slowly start to reappear despite the mtx and 10mg daily pred. It's not a full blown flair by any means, but all these things are making a slow mild comeback.

Does this sound like it's sun related or just a big fat coincidence?

I did lay in the sun on a couple of occasions and went swimming but not for very long and I was covered in sun cream. It wasn't particularly hot either, just warm but cloudy.

I always though that sun sensitivity and related issues would present themselves immediately after sun exposure, not a week later, but having said that, I have several crops of tiny blisters on my arms and neck so am assuming that this was caused by the sun and affected everything else?

I would be grateful for your wonderful knowledge and any advice on this please.

Thank you and love to you all. X

[Paul_Howard Partner LUPUS UK]

Hi Georgie-girl ,

New immune responses can take over a week to develop so the effects of sunlight will not necessarily be on the same day. In general, all people with lupus are advised to avoid sun exposure as it is one of the easiest ways of avoiding something which we know can make lupus worse. It is also advisable to be alert to the possible harmful effects of artificial lighting, computers and television sets.

If you would like to read more about light sensitivity and get tips for protecting yourself, please take a look at our blog article here - lupusuk.org.uk/coping-with-...

[Georgie-girl in reply to Paul_Howard]

Thank you very much Paul for you informative reply. I guess it makes sense really that immune responses would take a while to develop. I just never thought of it like that so thank you.

Thanks also for the link which I shall read up on later.

[sbcdw in reply to Paul_Howard]

Georgie-girl,

One thing from the article that I've found true is this:

"Sunscreen should be used even on cloudy days by light sensitive people because UV light can penetrate the cloud layer and you can never tell what the weather will be like later on."

I get very sick from the sun - even from reflected light on the pavement when traveling in the car during the day.

Both my husband and I went 18 years undiagnosed for lupus (our doctor is the commonality) and we've found that I'm most affected by UV-A (which penetrates deeper) and he's most affected by UV-B; he's most vulnerable to inside flourescent lights and I'm most vulnerable to any type of outdoor sun; although I've had lupus for over 35 years now, I can say that I don't get quite as sick immediately as I used to. Not typically, I also get very sick from heat (more like MS than lupus). Individually, lupus patients experience a varying spectrum of symptoms from UV rays - and some don't get symptoms at all. A "delayed hypersensitivity" seems to be very common.

I really 'feel with you' with this journey. What uplifts me and helps me to keep an emotional balance is looking a beautiful photos of nature I hope you find something that can help you, especially during the hardest days!

[Georgie-girl]

Thank you so much sbcdw,

How awful that it even affects you in the car! That must be so hard to control and manage. And how unusual that both you and your husband suffer from Lupus. I hope you're both able to help each other.

I don't know why I always thought the response was a quick one but you always seem to hear of people who went out in the sun and a rash appeared so I just assumed it was an immediate reaction. Never having had a response to the sun before I wasn't really sure if it was one or just a coincidence but from what I'm reading, it would seem it was a delayed reaction.

Thankfully, it isn't a full blown flair and is manageable, so I'm hoping it stays that way.

In the meantime, I have learned a most valuable lesson. Thanks again for your help. Take care.

[AimeeA]

The trick is to avoid direct sunlight even on cloudy days because the sun's radiation still makes is thru the clouds though not quite so much but enough to do damage if you lay out in the sun or spend hours outside in it. Sunbathing of any kind should be avoided even with sunscreen.

I always sit underneath some kind of cover like trees or a porch when outside and avoid mid day or times when the sun is strong especialky in summer. If you need to be outside for yardwork early morning or evening is better since the sun is weaker then and always cover up.

You can buy film to install on car windows to screen sunlight out and have it put on side windows and windshield since you can get a lot of sun sitting in a car without realizing it. nowadays the film can be clear and not necessarily dark like sunglasses so legal in most places to have it installed. You can often get a doctor's prescription for it if local laws against darkening car windows.

Remember how lupus works.. there is always a trigger that sets the immine system off, but once it gets going, the body's overreaction takes over and it spirals on from there. So not always immediate. So you need to be very aware of your triggers and take that very seriously to avoid them, and sun is among the worst for many. I avoid it like the plague and do quite well with that. I still have a happy and full life but I don't take beach vacations or sunbathe or sit in the sun and keep my exposure short, but there are so many other ways to vacation that don't involve broiling in the sun so consider those in future. If you must go to beach with family, only take a very early morning or very late day swim or walk and sit under umbrellas or tents, but not for long periods. Let them sunbathe but for yourself stay out of direct sunlight.

[Georgie-girl]

Thanks so much Aimee for all this wonderful information. It all seems to make so much sense now I'm experiencing it, whereas before, I didn't really give it much thought.

I'm certainly learning a lot and most definitely will avoid the sun in future and limit exposure if necessary to early morning.

You seem to be managing wonderfully and have it all under control. Guess that comes from years of experience.

Thank you again for all your help and advice.