Have you been able to find a way to live a normal life? My son was just diagnosed with Solar Urticaria last week. He's only 3 years old and having something like this at such a young age really worries me. Any advice?
Hello,
I was very glad to find this forum, our five year old has just been diagnosed with Solar Urticaria and we are trying to find out as much as possible about this condiiton.
At the moment we are keeping him out of the sun as much as possible, which is difficult as he is an active child and loves to play outside.
Any help or advice would be gratefully accepted.
solar urticaria help
Hi guys, my name is Claire and I am a sufferer of SU BUT!!!!!!! I would like to bring you some hope. When I first got SU I was not taking meds, not on the pill and I was living and working in Spain. I had to move back to the UK because it was so difficult to live with. I then started taking the pill and over the space of 2 years my SU slowly went away. I did not have the allergy at all whilst taking the pill. Now, I realise that some people on here actually think the pill is CAUSING the problem, but my point is that for me and these other people it does seem that sex hormone imbalance is to blame. This could be for many reasons. Thyroid problems, pituatory gland problems, ovarian cysts etc. For me, the pill seemed to balance everything out, then I decided to come off the pill 3 weeks ago seeing as I had been taking it for 8 years. After 3 weeks my SU came back and far worse than before. I can only be in direct light for no more than 1 minute before hives appear.
I am also a sufferer of asthma and allergy related sinus problems. These have flared up too since my SU came back. My mother died from lupus and although I may have inherited some auto immune problems, my ANA test was negative (thank god) so fingers crossed no lupus.
I am therefore looking into the hormone side first. I am visiting a photobiologist soon to look at this and maybe they can find an imbalance that can be put right. It does seem logical when you think that woman in particular suffer from SU at an age of below 40.For males this could also be the problem. Be sure to ask your GP for full hormone balance tests...and I mean FULL!!! they often miss out some important ones.
So I am looking out of the window now at the sun and feel depressed that I cant go out, but I know that if it went before it can go again. I am not sensitive to UVA or UVB I am one of the strange ones sensitive to visible light. This in one way makes things worse because you cant avoid that or use creams but on the up side I can use a sunbed to thicken my skin without a problem.
For those sensitive to visible light or infrared and have tried a million creams...you probably havent found any that work because most only protect from UVA and UVB. The problem was in the past that if you required visible light protection you had to use the really thick metal based creams like you see under the eyes of skiers!!!. This created a physical barrier like thick clothes. However after years of searching I have found a company that makes a cream that protects from UVA, UVB, UVC, visible and infrared light. And to make it better, they have one that dries clear to most skin tones!!!!!!. It isnt the cheapest, but if it means you can go out in the sun what the hell!!!. It is called 'total block 65' by Fallene. You can only buy it from the States but they ship worldwide. And a word of advice everyone....if the steroids arent working for you, dont take them. The docs dont tell you what damage they are doing...my mother ended up wheelchair bound from muscle damage caused by long term steroid use. Its not worth it.
I hope that you can all find peace in knowing that this can be sorted. Dont put up with 'you have to live with it' - Go back to your doctors and ensure they test for everything. Thats what they are there for. An allergy like this can be a sign of something much more, but in a lot of cases patients seem healthy. Some hormone levels are left out completely so go back!!!!. I would suggest asking for the following:
Thyroid hormone and FULL sex hormone balances including cortisol
Vitamin and Mineral levels
Immunoglobulin levels
Keep smiling and try the cream. You will feel so much happier knowing you can go out 🙂
Take care all, Claire x
new sufferer
Hello All,
I echo the sentiments of those who have already posted - man am I glad to have found this forum!! I'm 25 and have just been diagnosed with a severe case of SU with reactions to normal light as well as sun plus another photosensitive condition that they're not sure of yet. Testing has been fantastic if a little bit like torture and I look forward to starting my treatment - although looking at the other posts may not be as hopeful now.
If anyone has any tips on how to avoid reactions when driving in the car I would very much appreciate any tips - I can wrap up and take all the antihistamines I want but still get attacked in the car.
Thanks
Hi all
Don't know how I missed this forum discussion. Yup - I've had this too, for the last 40-odd years and have just had to keep out of the sun. Driving has been a problem - I wear hat, gloves and a blouse back-to front that has especially long sleeves :o.
The result is I am vitamin D deficient and it's taking time to get it back to normal - see my post no 2 here.
Knowing what I do now, I think this may well be linked with allergies and intollerances generally. For those I would look at probiotic gut bacteria, vitamin C to tolerance, and a general multivitamin/multimineral with at least 50mg of most B vits, and ensure adequate zinc intake, plus vitamin D3, along with a good wholefood diet (eg Mediterranean diet) with plenty of multicoloured fruit and veg. Having done this my reaction to sun exposure has lessened considerably - thank goodness.
Ah, I have this too! I just make sure I have factor 40 on (at least) on any exposed skin. If I do forget and the rash comes up I actually find that the only thing that stops it itching is anti bite/sting spray, steroid creams are useless for the itch. 🙂
Solar Urticaria
Hi, so glad i found this forum.
I've had this terrible condition since i was a teen and still got it now i'm 43 years old.
I also have a condition which i get hives when not in the sun.
So i have to take Telfast 180mg upto three times a day which i hate, i only like taking two a day.
I've seen every doctor and consultant and there is no cure.
I love sunny days but sadly the sun doesn't love me.