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.
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!
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.
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
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.
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.
I use what Linda uses. My kids and I do. ;D 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
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
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
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.
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
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
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
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
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
hmmm advice on how to convince him to take care of little girl and treat her illness seriously?
I'm thinking there's a reason you got separated and that's probably a big part of it.
No advice we can give, he probably has to hear it from a Dr to believe it
Roxanne hit the nail on the head with her reply, We ALL need to be more aware of the sun.
People are still not heeding the warnings early enough, they are widely distributed in all media, yet so many still think a tan is good..
Skin cancer doesen't look good on anyone!!
Dolly
I was a sun worshiper before sjogren's. I always thought I looked "better" or "healthier" with a little color. When I get down, looking at my very white body this time of year, I go to a tanning salon and get a tan sprayed on me. It lifts my spirits a little and it is nice to know that I can still get some color even without the sun.
jonnell
not easy had this with my ex and my son`s meds for constipation, all i got was grumbles and maons.
what i did was asked my GP to give me a letter stating the importance of the medication and the regime, also since that ddint work i sat him down ans said your access is based on the premise that you can provide the care he needs whilst he is there, if you continualu rpove you can be reponsible for his care, im wiling to go to a lawyer and contest that access! well that shaped him up and fast, and he took it seriously then, for he knew if it went to a family court and i could rpove he wasnt able or willing to give the care he needed the ball would be in my court, horrible i know, but he even gave my son a balling out verbally coz wehn he did go, he blocked the loo! , so that sorted that out!! yup there is a reason why there relationships fail, and im afraid why there is problems after the seperation, blooming ex`s eh ?
T x
Yea Wednesday I agree you think your problems are over when you seperate but its just the begining when there are children involved. Thanks for the advice I think it might be needed. Hugs and Kissess and lots of love. Jonnell and Jenna
Janna, I love you so much you always make my laugh. You are such a wise and caring person keep up the good work. Hugs and Kisses and lots of love Jonnell and Jenna
the sun is what made me and my doctor aware of my autoinmune problems in the first place.i broke out in bad rash on chest,arms and face 2 weeks before my wedding in vegas confirmed with blood tests.started plaquenil an other meds.so now when out in sun wear sunscreen,long sleeves,hat,long pants.was before always someone who thought they had to have a tan year around.laid in sun an tanning beds.now try to cover myself up because I become very fatiqued,nauseated,every possible symptom flares gets bad and UGLY for me.
Hi Jonnell,
You r in a tough spot. I guess that old cliche "Denial is more than a river" might fit. If Janna doesn't look sick it is probably more comfortable for him to act as if she isn't. Frankly a beach at 92 degrees for any 4 year old is kind of crazy, so could it be he just doesn't know how to take care of a little one?
Does he know about SS? Would he read at least basic info? Is the girlfriend someone u think will be around for a while? At least she did the sunscreen so maybe she would be willing to learn and help.
I know in one e-mail u mentioned Jenna might have PDD, so my other thought may not be possible for her right now, but I have worked with kids with special needs and it always amazes me how early they can learn aspects of their own self care. Maybe if you hooked things like taking meds to another part of her daily routine that always happens, she could learn to remind her dad. She shouldn't have to, but such is life.
And of course you can always come here to vent about his dumbass!
cinmac
Cinmac, dumbass i love it. Jenna doesnt have PDD my son Michael who is 13 does. Jenna is a very bright little girl. Her dad has been to all the rhumy appointments with me so he knows what the sun does to her. I think the denial thing is right he is still in denial about Michaels special needs (thinks he is spoiled) even know 3 psyh doctors have diagnosed him as pdd and he is in the special needs class. I think it is going to be a long summer this is the first summer with us seperated, but thank god he only has her on the weekends. I am a stay at home mom so hopefully we can keep her well during the week and hope he wakes up and smells the coffee. The girlfriend is real good with Jenna she has Lupus herself so that is my saving grace but with him I dont know how long it will last lol.Thanks guys I needed the laughs and advice. Hugs and Kisses Jonnell and Jenna
Okay, okay...so I'm in the shower just now...and thinking about dumbass has got me a bit lathered...when suddenly it hit me!
Does he have something that he takes real good care of like a car, motorcycle, boat, dog,...?
You could approach him like Miss Molly (from the old TV show "Romper Room." Jonnell you won't know this show cause you are too young.) does a classroom full of pre-schoolers.
You could say something like..."Dumbass honey, it's kind of like your car. You wouldn't leave it out in rough weather with nothing to protect the finish, would you? And you certainly know the importance of changing the oil regularly?....Jenna is kind of like that. Her paint is delicate and can easily be damaged. And if she doesn't keep her oil level at the right place on the dipstick (plaquenil) her pistons will freeze up and she'll end up in the shop! The Bluebook lists her as a high value item and I for one have committed to meticulous maintenance regimen!"
Janna
Djean! What a time to get such news! I'm sorry for it!
For what it's worth, my dermatologist said use nothing less then SPF 70 and I stay indoors until about 7:00 PM. I use Neutrogena Ultra Sheer dry touch sunblock, that's what the doc suggested and I hate anything that feels greasy.
Janna you have me rolling, Thats a good idea Ill try it. What would I do without you. Love you lots Jonnell and Jenna
Epson thanks for the advice Im only using 50 I will give that one a try. Hugs and Kisses Jonnell and Jenna