Jennas mom with a question about sun exposure

[jonnell]

Jenna recently started on Plaquenil.  Ive been reading about sun exposure in some of your posts.  I have a question, do you avoid sun exposure even with sunscreen or is it okay if you have sunscreen spf30.

[JannaLee]

I hate to say this, but you'll probably have to limit her exposure.  And I think you'll have to go higher than SPF 30... plus a hat, plus long pants and sleeves.

The sun can do bad things to AutoImmune skin.  Creating rashes and such...

My skin stings for hours after sun exposure (even with 50spf sunblock.)

I'm so sorry for this.  She's just a toddler and will want to play outside!

Hopefully I'm wrong about this....does anyone have a dissenting view?  Please correct me if I'm wrong!....I would love to be wrong!

[harrigan]

My daughter (16) is on CellCept and her consultant has always said she must use factor 60.  She is going to Spain this summer with a friend and family, the 1st time she will have been exposed to really strong sun (every time we have been to France it has rained!!)  She wasn't convinced that she still needed to avoid the sun but her Dr told us last week how much more likely skin cancer is as a result of the meds. 

[Patze]

I too would have her avoid the sun when possible.  Before SJS or an AI was suspected (and Plaquenil), I was in a restaurant with a few friends and sitting by a window, it was about 4:00pm and I couldn't figure out why my arm was hurting so as I'd only been there for a short time.  Finally when I got home and looked, it seems that my arm right above the wrist was sun burned and had blisters; thankfully I had a long sleeve shirt on or it might have been a whole lot worse.

To get burned doesn't take long and I'd hate to see Ms. Janna get burned like that or even worse.

Take care -

Patze

[Linda196]

There are 2 factors at work here, first, the skin is more susceptible to burning and damage because of the meds, and SPF of 50-60 is necessary (I like the waterbaby type, waterproof, SPF 50 and designed for children so good for sensitive skin).

Second, people with autoimmune disease can develop a systemic sensitivity (much like an allergy) to the sun's interaction with the skin, even when blocked, and they have symptoms of "sun sickness", nausea, headache, lethargy, much like heat or sun stroke. For this reason it may be necessary to cover up completely, or even avoid being out in the sun during midday.

It's so hard to restrict a child to playing outside only early in the morning or in the evening, maybe there's a sheltered play area for her? Also, if she isn't already doing it, try to get her in the habit of always wearing sunglasses when she's out, even if it's not a bright sunny day; autoimmune eyes can be very light sensitive.

[Etta]

It's always a good idea to have sun screen and long sleeves on children, but you may not need to over panic about keeping her inside on sunny days. I have diagnosed SS and have  been on Plaquenil for nearly two years now, and my skin and ability to tan is the same as its always been.

[Victoria05202000]

I use what Linda uses. My kids and I do.  I need that waterproof SPF 50 on. I was out in the sun this past weekend for probably 4 hours in 90 degree weather. I am doing well tonight! I don't hurt at all which is what happens with too much sunlight.  I also wear what I call my movie star sunglasses and at times I wear a sunhat.

Take Care!
Vicky

[cinmac]

Hi again, Just one other note, be sure what ever sunscreen you use has full spectrum protection.  Some of the most popular brands do not, and some sunscreens have ingredients that may be harmful, especially to children.  You may want to do some investigating online on some of the product safety websites.  Not that u don't have enough to worry about!  I just was reading about some of this stuff not long ago and wish I could be more informative, but lately info does not stay in my brain for long.  Brain fog!
cinmac 

[Marymum23]

Hi,
My daughter & I both spend a large amt of sun time and have AI issues...and I take Plaquenil,  and we both like water sports & live in southern California.   We regularly use sunblock & for me hats & long sleeves (when I'm not swimming).  I like zinc based sunblock because it is barrier  based vs. chemically blocking the sun.  It is hard for me to find a chemical sunblock that is waterproof & does not irritate my face, thus zinc based has worked best for me.  For daughter, spray on because it is easy to put on.  I am also a fan of Coppertone baby sun block spf 50 in the pink bottle.  It is zinc based  I think.

And my daughter found colored zinc oxide-in blue and yellow for her school colors for swim meets.  This looks so cute.

The most dangerous times for getting over-exposed for me are on overcast & cool days.  Then I forget to put on sunblock & get blistered or violet red...ouch.

I love those cute kids flap hats...my kids wore them when they were little & they looked great & kept them cool.

best wishes,
Mary in LA

[lindar]

There is some great sun block clothing on the market that works well.  I buy clothing from Coolibar but there are others.  The clothing is light weight and provides lots of protection from the sun. 

[wednesday mc haggis]

i can related to the sun sickness mymptoms linda described, i cant say i get a rash but hten over years ive just learned to avoid the sun, in scotland thats nbot hard lol

  if i am exposed to the sun i feel, headachy, weak, like having beend rugged realy, and can burn very easily, im a goth so its been  a standing joke i should be in the coffin not sunbathing lol.

i use total sunblock, apparently if sunscreen doesnt sit white/opaque on the skin its no use, do i use total sunblock, cove rup as much as i can, and do the sun in short blasts, if i dont i do burn easily.

  the sunscreen clothing is a good idea, used to get them for the kids, its got some special material that deflects sun for the skin, and must say if we went to the beach when they were young, they had factor 50 on exposed areas, and the skin under the clothing never burned.

   Ive also found aloe vera gel a great after sun product, if i ever did burn it seemd to soothe and heal it way quicker

T x   

[KYMOM]

Jonnell,  Keep Jenna covered with suntan lotion and a hat.  It is not just the plaquenil.  My husband and several friends have been treated for skin cancer because of their sun-worshiping youth.  I try and get my teens to understand the long term effects of sun exposure but it is hard when they are at an age when they are invincible.  If Jenna gets used to lotion every time she goes out into the sun the chances of her using it on her own when she gets older are greater.  As always hugs to Jenna. Roxanne

[lelole]

Hi,

I have learnt loads reading this - I didn't realise that the fact that I always feel ill after having sun is related to SJS!

Jonnel - I have a 2 yr old toddler and I know it can be really hard to keep them out of the sun when they want to play!  luckily for me I don't need to be as careful with mine as you do for Jenna.  You can get great sun protective wear that is made of the same material as bathing costumes, so she can wear it to the beach, and you can get get it in full length sleeves and legs, and get hats with long flaps at the back to protect her neck.  I am in the UK so don't know whihc brand names to suggest to you, but here Sun togs  is a good brand - perhaps you could look at their webiste to get an idea of what kind of things are avaialable.  I always find that succumbing to the marketing helps - I have seen disney princess factor 50 block here - it may encourage her to want to wear it!

Leah xx

[jonnell]

Thanks to all of you for your answers and suggestions.  I dont have a problem with getting her to put it on she gets a little to much,  thinks it is fun(lol).  I am just trying to get her dad to understand the importance of not keeping her in the sun.  We are seperated and he thought it would be nice to take her to the beach in 92 degree weather here in Jersey(what a idiot) yesterday.  His girlfriend loaded her up with sunscreen(which I am thankful for)  She came home so exausted I had to keep her home from school today to get some rest.  He also failed to give her her medicine on Saturday any suggestions on how to make him understand the importance of limiting her sun exposure and exhausting her.  I dont know maybe Im to overprotective.   Hugs and Kissed   Jonnell and Jenna

[JannaLee]

I'm not sure how to deal with this.

You probably know how his personality works better than anyone.

Short of saying this is EXTREMELY important to safeguarding his daughter's wellbeing (who is the most precious possession God will ever give to him for Pete's sake!)  I suppose you could approach the girlfriend with an article about Sjogren's and the importance of Plaquenil, etc.  Maybe begging her to be the responsible one will shame your EX and WAKE THE DUDE UP!!!

Good grief!  He needs to get with the program!

Janna