solar urticaria

RE: solar urticaria

What a terrible allergy to have. The Sun is so reviving and brings joy with its light. Not having to go out in it would be awful for me.

Do you know what causes this condition? What is it about the Sun that your body disagrees with? You say that you didn't suffer when you were pregnant, so perhaps the answer lies there.

Hope you are feeling better.

Love,
Patsy.
[&:]

RE: solar urticaria

hi, well know one know's how it starts ur body just rejects the uva/uvb rays like it's a antibody, I wouldn't be surprised if othersolar urticaria sufferers have depression or have SAD maybe it's all linked one we'll find out.

the love n light is burnin bright

RE: solar urticaria

Sun / UV light hypersensitivity isn't as rare as you might think.
If you're on any medication, then do check the leaflet small print. On the herbal front, then St John's Wort is an uncommon possibility. There may be others.

Avoidance of sun & UV light, is only likely to contribute to SAD & sleep pattern problems, etc, so would suggest NAET to resolve the issue. There's likely to be an issue with certain foods & nutrients (especially vitamin D) that would need to be clearedfirst, then radiation & UV shouldn't be too difficult if there are no other major issues. Heat itself, of course could be an issue, as traditional Chinese medicine lays great emphasis on environmental factors i.e. heat, cold, damp, etc.

It sounds fairly straight forward, but that's just my view.

Good luck - Andrew.

RE: solar urticaria

Thankyou for you veiw andrew,
The problem isday before you get it ur fine,out in the sun enjoying urself soaking up the sun and the next day you do it again and you have the allergic reaction out of nowhere and it does change the rest of your life,for some people medication does not work.How can the body change in just 24 hours?
When i got it i was not on any medication and ate pretty heathily.

RE: solar urticaria

It's all relative, so it sounds like you can tolerate a some UV exposure, but you have a limit that's less than the norm.

I'm sure it is life changing, but that doesn't necessarily mean that it's for the rest of your life.

The implications are more widespread than you might think, as it can mess up your whole endocrine (hormone) system, especially the diurnal rythym (day- night cycle -melatonin & seretonin - mood, depression, etc.) and vitamin D production (that can affect calcium absorbtion - implications being osteopenia & osteoporosis).

I've treated several people now with UV hypersensitivity with NAET and it's not longer an issue for them. Admittedly only one of them was severe and it's almost always the case that there are several other allergies / hypersensitivities that need addresing first.

NAET practitioners are a bit thin on the ground in the UK, but I know at least on in Scotland -
[link= http://allergyfree.tripod.com/id28.htm ]http://allergyfree.tripod.com/id28.htm[/link]

Failing that, then check - [link= http://www.naeteurope.com/gb_default.asp ]http://www.naeteurope.com/gb_default.asp[/link], which is the official website for all NAET practioners in Europe.

I'm not sure that Aaron Cote's clinic (the first link above)is listed on the NAET for Europe site (the second) because he's Canadian and trained in Canada and the USA. Either way - he's a sound bloke, knows his onions & treated me before he slopped off North.

Andrew.

RE: solar urticaria

Thankyou so much andrew,
I will definatly check this out, would love to go out in the sun without medication and live normally again, well some sort of normality hehe:D

love and light xx

RE: solar urticaria

I hope that you can get this sorted out, Angelheart. The Sun is our friend, and it makes us feel good, alive and refreshed. Indeed, it is starlight under another name. I am sure that Andrew is right when he says that sufferers of this condition develop SAD, no matter what the time of year.

Hoping you will get better.

Love,
Patsy.
[8D]

RE: solar urticaria

No probs AH!

A few further thoughts on associated sensitivities;

Vitamin D - more a kind of problem assimilating & utilising, but amounts to the same. The logic being - exposure to sunlight increases production - system says - 'well I'm not sure that's a good idea' and goes into crisis management mode.

Other forms & sources of radiation;- TV, PC monitor, high current mains electrical equipment, mobile & remote phones, etc.

These are just possibilities / ideas thatmay or may not be relevent, so don't panic. It should just be a matter of testing & treating as appropriate.

Good luck - Andrew.

RE: solar urticaria

hey andrew,
it is me again!
i think i may have come across a link between solar urticaria with women and contraceptives,tell me if you disagree ok?
before i got this condition i had been getting the depo provera injection every 3 months that was 1 year b4 i got sun allergy then carried on with it 1year after,before the injection i was on microgynen excuse the spelling if wrong!
i've been on the pill apart from during my preganciesat that times i desensitised and was rid came back after had babies.
wot do you think then?

lots of lovies
angelheart

RE: solar urticaria

Could be a possibility. Not come across it myself, but if you Post or send links to articles I will do best to check them out.

Andrew.

RE: solar urticaria

ok....it is nic to stumble onto this site. i am 26 and just got SU last spirng. out of nowhere. I have alsways spent time int he sun tanning...went to HA every other year, laid out on every sunny weekend in CA, occational tanning bed. A part of me feels like i brought this on myself but i am now understanding that it is an immune disorder. I have done some research and have found that there are the following medical proceedures that have worked for some patients in the past:
plasma exchange (plasmapherisis)
immunologic pathogenesis
cyclosporin

has anyone heard of these treatments?

Doctors have given me steriods and special antihistimes, all of whcih DO NOT work.

I have hound it is easier in the summer months due to decentiztion. Living in CA makes it easy to expose my face, neck and arms every other day for 5 minutes and i do not get the hives, nausea, etc. Hoever, in the winter ith weeks of rain, i am reminded how aggrivating this is when my face, neck, etc gets hives. i feel so dirty. not only is it a physical burden, it has serious psycological affects.

we need to put our resources toghether to learn more about this disease.

RE: solar urticaria

ok....it is nic to stumble onto this site. i am 26 and just got SU last spirng. out of nowhere.
I have always spent time in the sun tanning...went to HA every other year, laid out on every sunny weekend in CA, occational tanning bed. A part of me feels like i brought this on myself but i am now understanding that it is an immune disorder.

I have done some research and have found that there are the following medical proceedures that have worked for some patients in the past:
plasma exchange (plasmapherisis)
immunologic pathogenesis
cyclosporin

has anyone heard of these treatments?

Doctors have given me steriods and special antihistimes, all of whcih DO NOT work.

I have found it is easier in the summer months due to decentiztion. Living in CA makes it easy to expose my face, neck and arms every other day for 5 minutes and i do not get the hives, nausea, etc. Hoever, in the winter with weeks of rain, i am reminded how aggrivating this is when my face, neck, etc gets hives. i feel so dirty. not only is it a physical burden, it has serious psycological affects.

we need to put our resources toghether to learn more about this disease.

RE: solar urticaria

Hi,
I too have solar urticaria. I have created a support group for sun sensitive people on yahoo. To join, you need to become a member of yahoo, and then join our group. Please come by and say hi!
[link= http://groups.yahoo.com/group/sun1/ ]http://groups.yahoo.com/group/sun1/[/link]

AB,
The fact that you don't get it in the summer and only in the winter reminds me of what some people with heat hives ([link= http://groups.yahoo.com/group/Cholinergicurticaria/ ]Cholinergic urticaria[/link])are doing. They don't sweat during the winter, then in summer, they get hives when they first sweat, and hives go down after they start sweating on a regular basis. Some of them have tried sweating on a regular basis and that has seemed to help. Another thing is that instead of solar urticaria, it might be polymorphous light eruption (PMLE)which does get better by hardening. PMLE is common in cold places where people dont' get sun, then suddenly gets exposed in the summer.

Angelheart,
I have a file on the website with a list of photosensitizing drugs which includes oral contraceptives. Someone in our group is also wondering if contraceptives could be to blame for her solar urticaria.

Accents

PS I would take the NAET folks with a grain of salt.

RE: solar urticaria

Funny this, my 5 year old daughter has broken out in a rash after being out in the sun this weekend. I thought that it was because we used last years suncream, and she had some sort of reaction between the sun and the cream. She did break out last summer too, but had been ok this year so far. I thought she would be fine with a high SPF, but now am worried about her vitamin intake.
It's interesting about SU being an immune disease as my husband has crohn's and another daughter has morphea...both auto immune diseases. Maybe there is some connection?
Poor little love spent all night scratching and has gone to school covered in calamine lotion!!
kx

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 .

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.