Plaquenil and photosensitivity

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NW - 01 Sep 2004 18:12 GMT

Hi everyone,
Haven't posted here for a while.
Apparently, I'm photosensitive and have been it for almost a year. I just
thought my psoriasis had managed to peek out under all meds, but everytime I
went outside this summer to nuke it, I ended up with a rash all over my
face, hairline, chest and back. Dermatologist said it looked like
polymorphous light eruption, but that sometimes photosensitive rashes of
those with connective tissue disease can look like PLE and that I should be
watched because of family history and my mouth ulcers and vasculitis.
Because of my ankylosing spondylitis, I am on immunosuppressants, so
I'm already closely monitored by a rheumatologist anyway.

My rheumatologist is starting me on Plaquenil, and I'll also have to wear
sunblock with titanium dioxide everyday. What are your experiences with
Plaquenil? Did it help with the photosensitivity? Which SPF are you wearing?
Are you able to be outdoors on a sunny summer day?

Also, do you get burned through windows as well? I suspect I do, because the
rash tends to look worse on the left side, which is the one facing the
window by my desk. I also get a rash when I'm in stores with fluorescent
lightning.

Nina

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KCat - 01 Sep 2004 18:38 GMT

"NW" <ninbotw@yahoo.se> wrote in message

> X-No-archive: yes
> My rheumatologist is starting me on Plaquenil, and I'll also have to wear
[quoted text clipped - 8 lines]
>
> Nina

Hi Nina,

I have been on Plaquenil for several years now. Quite honestly, I can't
recall when I started it. I find that it does not help nor harm the
photosensitivity. But every patient is different.

Yes, you can get the nasty UV wavelengths easily through glass. Glass does
not block UVA which is believed to be the major culprit of lupus
photosensitive reactions. Make sure your sunblock covers *all* the UV
wavelengths. There are more and more sunblocks out that do so but they must
have zinc in them (z-cote seems to be the most effective and popular - and
of course, a bit more expensive.)

Falene has a new Total Block product out that sounds interesting, called
COTZ. I have not tried it yet. Currently I use Skinceuticals 30 SPF because
it moisturizes. When I run out, I will probably try COTZ

http://www.totalblock.com/TBProducts/TB58/

Their main page for other sunblock products
http://www.totalblock.com/

http://www.ghg.net/schwerpt/ASLFAQ/products.htm#suncloth

No, I can not be outdoors on a sunny day - at least not for long. We
confirmed this recently when I spent about 20 minutes helping hubby. I had
my SPF hat and shirt and pants. But was having to stand in the sun and
ended up with my face and hands swelling and a severe migraine for 2 days
following. But I am an extreme example of photosensitivity. I get very
tired after 30 or 40 minutes in a dept store with uncovered fluorescents.
Regardless of coverage. We limit our errands to 3 "stops" on any given day.
Cloudy days offer some relief but much UVA still penetrates clouds so
exercise caution in this regard. You may be able to do just fine with
sunblock and mechanical (clothing) coverage. It helps me but it doesn't
provide me with the ability to stay out hours at a time.

HTH,
kcat

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Andy - 01 Sep 2004 20:57 GMT

[

>Make sure your sunblock covers *all* the UV
>wavelengths. There are more and more sunblocks out that do so but they must
>have zinc in them (z-cote seems to be the most effective and popular - and
>of course, a bit more expensive.)

I'd thought that those with Titanium dioxide were as effective as zinc
oxide - am I wrong?

Signature

Andy Taylor [Chair, N E Lupus Group]
See http://www.northeastlupus.org.uk for more!

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KCat - 01 Sep 2004 21:55 GMT

> [
> >Make sure your sunblock covers *all* the UV
[quoted text clipped - 4 lines]
> I'd thought that those with Titanium dioxide were as effective as zinc
> oxide - am I wrong?

honestly don't know - I'm just parroting what my derm told me a couple of
years ago.

she could be wrong. which means I could be. Maybe there is an efficacy
difference based on quantity - a lot of women's cosmetics have titanium
dioxide but are not touted as having any sun blocking trait.

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Lee Thompson-Herbert - 02 Sep 2004 04:07 GMT

>honestly don't know - I'm just parroting what my derm told me a couple of
>years ago.
>
>she could be wrong. which means I could be. Maybe there is an efficacy
>difference based on quantity - a lot of women's cosmetics have titanium
>dioxide but are not touted as having any sun blocking trait.

It's quantity. Titanium dioxide gives a much brighter white, so they
don't need to use as much pigment if it's just being used for coloration.
I've used the Fallene COTZ, by the way. Lives up to its promise. Not
quite as good as Total Block, but it doesn't have the chemical sunscreens
in it, either. It's good for days when my skin is too irritated for anything
else.

And yes, I'm another one who gets sunburn from fluorescent and halogen
lighting. We had to switch out the nice spots in the living room of
our new house because the previous owners had gone with energy-efficient
halogens. You could almost hear the sizzle as I started to fry under
them.

Signature

Lee M.Thompson-Herbert lee@retro.com KoX 1995, SP4
Head Muso, White Rats Morris, Faultline Morris
See my CafePress Shops: http://www.retro.com/employees/lee/CafePress.html
"A head-on collision between Morticia Adams and Martha Stewart"

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KCat - 02 Sep 2004 16:26 GMT

> In article <JGqZc.15834$e42.9219@newssvr22.news.prodigy.com>,

> It's quantity. Titanium dioxide gives a much brighter white, so they
> don't need to use as much pigment if it's just being used for coloration.
> I've used the Fallene COTZ, by the way. Lives up to its promise. Not
> quite as good as Total Block, but it doesn't have the chemical sunscreens
> in it, either. It's good for days when my skin is too irritated for anything
> else.

Thanks Lee. That make sense to me. What it is it about COTZ that makes it
"not quite as good" - texture, how it goes on? Actually blocking efficacy?
Just so I know. I've worried about the Total Block because of skin
sensitivity to various stuff. I no longer wear typical cosmetics and
sometimes add a dab of hydrocortisone cream to my Skinceuticals before
applying it because it can irritate my skin.

Halogen and even incandescents will really make my skin feel like it's
frying too. the fluorescent gives me a headache and makes my face feel warm
but Halogen and incandescent actually emit UVB and can burn you as easily
as the sun. For those of us that are photosensitive - well, it's
frustrating.

For Christmas I have asked hubby to get me an LED reading lamp - not sure
about the output of those but was given the impression that they are much
cooler and safer than other light sources. They range in price from $50 to
well.. a few hundred if you wanna go fancy. Any idea about these?

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Andy - 02 Sep 2004 19:46 GMT

[

> I no longer wear typical cosmetics

[have you given up the matt black, then?]

>and
>sometimes add a dab of hydrocortisone cream to my Skinceuticals before
>applying it because it can irritate my skin.

Isn't there a possible danger of thinning the skin by repeated
application of hydrocortisone?

Signature

Andy Taylor [Chair, N E Lupus Group]
See http://www.northeastlupus.org.uk for more!

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KCat - 02 Sep 2004 22:11 GMT

> In article <XYGZc.16056$iS6.10709@newssvr22.news.prodigy.com>, > Isn't

there a possible danger of thinning the skin by repeated

> application of hydrocortisone?

yup - keep in mind that I don't go out but 1-2X a week and don't use that
particular combo unless i am going to be out for more than an hour. (talking
about drive time, etc. not just going out and standing in the sun)

but yeah - it's a concern - especially on the face where the skin is already
pretty thin.

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Andy - 03 Sep 2004 16:53 GMT

[

>but yeah - it's a concern - especially on the face where the skin is already
>pretty thin.

Take care - we don't want you spilling out all over Texas.

Signature

Andy Taylor [Chair, N E Lupus Group]
See http://www.northeastlupus.org.uk for more!

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Katerina - 03 Sep 2004 05:23 GMT

>[
>> I no longer wear typical cosmetics
[quoted text clipped - 7 lines]
>Isn't there a possible danger of thinning the skin by repeated
>application of hydrocortisone?

Yes, after time any use of cortisone will thin skin, but so will other
medications, we darned if we do and darned if we don't :)

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Lee Thompson-Herbert - 03 Sep 2004 08:32 GMT

>Thanks Lee. That make sense to me. What it is it about COTZ that makes it
>"not quite as good" - texture, how it goes on? Actually blocking efficacy?
>Just so I know. I've worried about the Total Block because of skin
>sensitivity to various stuff. I no longer wear typical cosmetics and
>sometimes add a dab of hydrocortisone cream to my Skinceuticals before
>applying it because it can irritate my skin.

"Not quite as good" as in not SPF 65. The chemical sunscreens do make
a diffrence for me. However, if they irritate your skin, the added UV
tolerance probably isn't worth it. COTZ is a little thicker than Total
Block, but not really goopy or sticky, unlike some titanium dioxide or
zinc oxide based blocks.

Signature

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NW - 02 Sep 2004 23:08 GMT

Thanks for your replies KCat and Lee, it was interesting to read.

The sunblocks you mentioned seem pretty high-tech in comparison to the stuff
we have over here in Sweden. I've tried the one my derm suggested, and it's
pretty much identical to clown makeup. Sigh. Hopefully some of the
commercial skincare brands here carry sunblocks.

Nina

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accents - 23 May 2006 13:30 GMT

I too have extreme sun sensitivity, and I am trying to round up people like
myself to join a group, so that we can help each other.

Moderators: We are a rare group, so we have a tough time finding each other.
So I would appreciate you letting me post this message.

I have solar urticaria. I take antihistamines and use a sunscreen that
protects against visible light. I have used Cotz, but it did nothing for me.
I think it didn't work because I am sensitive to visible light.

I have created a support group for sun sensitive people.
Our website is at Website: http://sun1.awardspace.com/index.html
Our forum is at http://groups.yahoo.com/group/sun1/
To join, you need to join yahoo, then join our group. Please come by and say
hi.

We are a support group for people who suffer from sun sensitivities such as
solar urticaria, lupus, porphyria sun hives, photosensitivity, sun allergy,
rheumatoid arthritis, actinic prurigo, hydroa vacciniforme, chronic actinic
dermatitis and more. We share our experiences and ways of coping and living
with sun sensitivity such as sunscreens, clothing, hats, sunglasses and the
effectiveness of medical treatments. Sun sensitivity shows usually shows up
as a bad sunburn in a very short amount of time. Sun sensitivity can be due
to drugs or medications, plants, phototoxicity and diseases.

See you there,
Accents

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