[Clare.T]

The top current recommendation is La Roche Posay with Mexoryl. This is not available OTC in the USA because the FDA hasn't approved it, but is readily available on line , from Canada for USA purchasers or on ebay.

It's worth looking around for best offers.

For example :

http://search.ebay.com/anthelios_W0QQfcclZ...QfsooZ1QQfsopZ1

Look for the SPF 60 any higher doesn't make that much difference.

I liked the look of their product SPF 30 very protective against extreme conditions with bees wax and titanium dioxide. It could be handy in certain circumstances.

The degree of sun protection depends on the highest factor you use. You can't use two products and add the SPF's together

Remember to protect your eyes. Sunlight promotes cataracts and the eyes and surrounding skin can be affected by skin lupus




The other highly recommended for USA users is Fallene, which LFA carries ads for in its Newletter.
Available by post also from online pharmacies.


http://www.totalblock.com/

I think they'll send samples.

Take care

Clare

 

[winddancer429]

Rit Sun Guard is an excellent sunblock. You add it to your regular laundry and your every day clothes become sunblocked. I use it regularly.

 

[Bern2]

Hallo ClareT,

I have been told recently, by my optition, that I have the starting of cateracts. I did not know that the sun could cause this. I have the skin problem, as one of many Lupus symptoms, but was never told of the consequences of not wearing sunglasses. Sun block yes, for my skin, but the eye protection was never emphasised. I have been lax in that area. I thought that my eye checks at St. Thomas' Eye Department was because I was on certain medication that could leave deposits at the back of the eye. I am now concerned.

Regards

Bern

 

[chantal]

thanks for the web site ! i just ordered the COTZ total block for sensitive skin
i wanted to get the 65 but i thought i would let you all know that only the COTZ is water proof, it doesnt really say on the web site that the other two are not water proof but they are not

cya!

 

[Ness-88]

I have had great difficulty in finding sun screen that is effective so thank you for informing us of some helpful places to look. I have tried a large variety of sunscreens already but nothing seems to work, so once again thankyou.

 

[Mariposa]

Hello,
I was recommended sunscreen that contains: Parisol/Avobenzone for UVA & UVB protection. I use Baby Magic spf50, fragance fee, and is Titanium Dioxide Formula.

Is the only one that has worked for me.

 

[JLmuir]

I thought that my eye checks at St. Thomas' Eye Department was because I was on certain medication that could leave deposits at the back of the eye. I am now concerned.

Regards

Bern

Bern,

Like with so many things, cataracts can have lots of causes. The information you received from St. Thomas' is correct as far as taking the medication Plaquenil. One should have their eyes checked, and a peripheral field vision computerized test performed every 4-6 months, depending on what dosage plaquenil you are taking. The plaquenil can leave deposits on the retina, but it is rarely seen these days. Usually the symptoms that the patient sees is a lack of peripheral vision or clouding around the edges of their vision.

However, cataracts are most often seen in lupus patients who are on long-term steroids. Steroids are notorious for making cataracts. I don't know if you take any, but could this be the culprit? Your eye physicians should be able to tell you.

And all eyes need protection from the sun -- it can cause problems with both the macula and the retina, not to mention cause crow's feet! So, be sure to wear sunglasses that have UVA and UVB protection. Even on a rainy day, sometimes sunglasses are necessary to protect from the glare.

I hope this helps clear things up for you. I'm happy to answer more questions if you have them.

Good luck with those cataracts -- I have two, too!

-- JLmuir

 

[Raglet]

my favourite is whatever is on special, and has a factor of at least 40.

oh yeah, I am a cheapskate, but then I go through buckets of it.

I slop it all over me and everyone else in sight, including the cat (pink nose).

Down under we have a huge whole in the ozone layer, which means our uv rays are particularly intense as the ozone layer filters them out

cheers

raglet

 

[Clare.T]

Raglet you aren't particularly sun sensitive if I remember rightly but yes the cheaper the better. The UK pharmy chain Boots has 2 for 1 offer at the start of the season if we want something that's not on the prescription list. That means £15 instead of £30 which is about what the Mexoryl containing sorts cost.

Yes ! Animals too can get discoid on their noses, not to mention SLE

Bern, I don't know if there's some particular reason why you should see an ophthalmo, but St Thomas' assured me I would be OK only having an annual test at the optometrist. That's despite me having been on either Plaquenil or Aralen for very many years and on Aralen 500mgs a day for about 5.

Cheers

Clare

 

[LoopyLoo]

I have been using Ultrasun which you only need to apply once a day & it has to be at least 45 minutes before going outdoors.

It is swiss made & mostly used by people that Ski but has also been very successful with those that have photo sensitivity. It will protect for UVA & UVB.

I am now allergic to many cosmetics & sunscreens but this works for me. I am a converted former sun worshipper and it stops me breaking out or feeling nauseous.

I do have trouble buying it so normally order over the net.

Cheers,

Pam

 

[head06]

Sunblock

Hi everyone, I was recently dx with lupus and APS. My rumy told me that there wasn't any sunblock out there that was any good. He said that your just bathing in sunblock when you use sunblock, that I have to cover from head to toe.

 

[Lily]

Hi there,

It gives us a fair amount of protection and is far better than not using it, so I'm not sure where his comments are coming from. If you are really sun sensitive like I am then yes covering up if you are out for any length of time affords you even more protection.

The secret with sun block too is that often people dont know how to use it properly. It should be applied 15 minutes before exposure and most say it should be re-applied every 2 hrs. If we dont do that then it can be useless to us.

I also always try and wear a hat if outside, remember you dont have sunscreen on your head so it will still be exposed to the sun's rays. And a baseball cap is not enough protection because it doesnt shade your face and ears enough. Wide-brimmed hats are best. If I know I am going to have a long sun exposure, like standing in a cue in sunshine then I take an umbrella too :hehe: I do try to avoid any exposure apart from getting in and out of the car if possible. Otherwise the consequences are not worth it for me, even flourescent lights set my lupus off, so I use sunscreen when exposed to them also. Not everyone is that sensitive but many of us are.

Sensible precautions are all we can do, we cant live in a dark bubble, but we do need to heed how dangerous the suns rays can be for many of us and minimise our exposure.

love
Lily

 

[Mrs H]

I too use Ultra Sun & it is fab. :lol:

As said before you only have to apply it once a day (in the morning after a shower 45 mins before you go in the sun).

Imagine it is hot and sweaty and you have all your clothes on - do you want to slop on suncream - greasy and yucky ...... you dont have to with Ultra Sun.

I am still careful to cover up however - but when I went to France a couple of years ago I used it on my husband who came back as white as when we left!!!!!

You can get it on perscription in the UK (which makes up for having to pay for steroids!!!!). Only the strongest one though (which is sensitive and very high factor). Also absorbs well.

Hope this helps.......

Mrs H

 

[LoopyLoo]

Mrs H,

I didn't know you could get Ultrasun on prescription, how do I go about this...just ask my GP? I use the UVA 93% & UVB 30 super sensitive brand. I normally buy it online but found the site was actually a chemist about 10mins from my house in Glasgow. Funny thing was it was still cheaper on the net than the short drive!

I couldn't live without it & where I would tan really quickly before the sun doesn't touch me at all. I also don't get the nausea if I apply it correctly.

I'm intrigued!

Hugs,

Pam xxx

 

[Clare.T]

Hi Pam

My consultant mentioned sunscreen on his letter to GP, but GP didn't know what was available on NHS so I asked pharmacy.


Clare

 

[Mrs H]

Loopyloo,

I rang the UltraSun people (website below) and they told me I could get it on perscription. They gave me some code...and said Boots definatly supplied it. After a chat with my doctor (who had to hand write the perscription) and a chat with my chemist (as was not a Boots) they all decided it was true and I got 3 tubes for the price of a pescription.

You have to have the highest block one - which is fine with me!!!!

Give them a call/e-mail..they are very helpful and will prob send you a sample to check you are ok with it.

Hope this helps.

Mrs H

http://www.ultrasun.co.uk/
http://www.ultrasun.co.uk/

 

[Wolf in the shadows]

Block is totally different to sunscreen.

Block totally blocks uva and vb and so no tan, they are usually thick and white or silvery greyish and use a chemical block.

Sunscreens that ultrasun advertise are not blocks so please be careful
From what I can see from that link NONE of those products are block and they only go up to a spf28? Thats low for a lupie to wear and they actually advertise that their suncreams allow you to tan ugh! So they aren't blocking at all.

I use spf 50 2 or 3 times a day and still get a blush.

Boots are doing a special bogof on L'Oreal spf 50 http://www.boots.com/shop/product_details.jsp?productid=1044277&classificationid=1009326

http://www.boots.com/shop/product_d...1029441&classificationid=1044722&slmRefer=000

 

[Mrs H]

I am only going on personal preference and UltraSun has been amazing for me. Their factor 28 is actually double that in our scale (forgive me as cant remember the details, but us (UK) and the Ozzies use a different scale and one is half of the other). This means that it is actually factor 56 here (I guess that means that their scale is half ours and it is in Oz scale)!

I am still careful to cover up, but it is such a relief to wear something you only put on once. It has kept me a snowy white all summer.

I suggest you talk to the people at UltraSun as they are very helpful.

I think it must be pretty good/reliable to be able to get it on perscription.

Mrs H

 

[Clare.T]

I must say I would not be happy with a product that says

•

Only need to apply once a day for a natural and longlasting tan to develop.

My understanding is that a tan equals damage to the skin. At the very least, on my unscientific logic, it has got to signal changes in the skin, activation of cells.
If there wasn't some sort of cellular stimulation the tan would not develop.

I haven't the foggiest whether this sort of tanning cell activity has anything to do with UV stimulation of our immune systems to promote disease activity

I have a type 2 skin which is the second 'fairest', " tans only lightly, burns easily" or something like that, type 1 being "nevers tans, burns fast ".

In other words I do not tan. Even in the old days when I had no special concerns I only went a slightly darker shade of pale and mostly it was really dark pink, depending on the light.


From all I have read on reliable sites, sun protection needs to be applied regularly to be effective.

If their claim is true I wonder why no other company makes it. But they guard their secrets because this is big money business these days so it's probably impossible to find out.

What ingredients are listed on the ultrasun packaging ? I couldn't see it on their website.

However comparing their claims with those made by other companies like La Roche Posay for their Anthelios range with Mexoryl TM ingredient, ( which is the top recommendation by top lupus dermatologists, who presumably know what they are talking about),
I am not impressed by Ultrasun's claims & statements.

Of course 'sceptic' is my middle name and very possibly my misgivings are unjustified.

All the same that's what I feel about it, rightly or wrongly.
The best sunblocks have both chemical absorbers like parsol and physical blocks like zinc oxide or titanium. These days this is micro particles. There are plenty of efficent sun blocks which are barely detectable on the skin.

The Anthelios range has one that is totally invisible and you can't even feel it when you touch your face

Actually I don't mind a very slight whiteness because it reassures me I have put something on ! Also it helps camouflage redness and make a good makeup base.

For me anyway.

I read a comment to the effect that sun blocks/screens are the last form of protection, meaning that the first is not exposing oneself at all or as little as humanly and practicably possible.
Then comes cover up and then the sunblock.

I am more concerned with the UVA rating, the 4 or is it 5 stars.

Each to his own and all that

Cheers
Clare

 

[Wolf in the shadows]

Once a day sent me into the most terrible flare!, If you tan then your dna is being damaged by the uv penetrating and its those damaged cells that cause us the problems. The UK packaged ultrasun is only spf28 for uvb and spf16 for uva. Maybe fine for non sensitives but I can'twear anything that low