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Posted 4/14/2008 12:41 PM (GMT 0)
Hi everyone,

I'm going to Florida on thursday and I'm wondering if you can give me some advice without flaring up.I'm from Wisconsin and really don't stay out in the sun but were going down for my father's 70th b-day and its all out in the sun,pool etc....I'm not sure if the meds I take will make me burn more or not list where in sign out bottom of the page.I'm planning on taking 45 block for the sun.Can you tell me what a flareup might feel like from the sun?

Thanks,

Mary

Posted 4/14/2008 2:53 PM (GMT 0)
HI MAry,

 

Yes, your prednisone will definitely make you more sensitive to the sun, I think the plaquenil too.  Best defense to avoid a flare is to seek out shade!  Wear a wide brimmed hat, stay covered up, and apply sunscreen frequently.  If you can arrange it, have a table with an umbrella set up for you to stay under.

 

A flare up from the sun will feel like any other kind of flare up.  If you have skin involvement, you will likely notice an increased redness or rash. The way I feel after being in the sun is fatigued, physically sick, totally drained, just plain crappy!

 

I highly recommend an umbrella to be under, or to seek out shade, even if it needs to be under a huge, beautiful palm tree!!! 

 

Have a wonderful time!!

 

Posted 4/14/2008 2:55 PM (GMT 0)
Mary, for me when I flare from the sun, I end up feeling sick and flu-ish and a lot of my lupus symptoms get worse and I get some rashes. The sunblock will help, but even with sunblock I still react from being in the sun, so I usually bring an umbrella and a hat. I find that I really have to stay in the shade or bring my own shade. There are some clothes that protect from the sun too. I've seen them in the Lupus Now magazine. Take care and have a great trip :)
Posted 4/14/2008 3:57 PM (GMT 0)
there is sun block you can wash into your clothes it is with the dye for clothing in a box just like the dye is but has no dye in it and can be safely used in the washing machine. I suggest white clothing if at all possible because white deflects more sun than any other color. Also use the strongest and best sun block you can, wear a big hat, use an umbrella for shade, DO NOT GO IN THE WATER WHEN THE SUN IS OUT because it magnifies the sun and will make things much worse. Always listen to your body, if you feel ill or unwell GET INDOORS! I am sure your father cares more about your health than a party. Just trying to be there will show how much you care, especially if you make sure he knows that the sun could make you very very ill.
Posted 4/14/2008 5:52 PM (GMT 0)
Mary,

   The others had some great advice for you. One thing I have learned over the years is that even if the sun isn't shinning directly on you it can reflect off the sand, water, concrete and even snow if you aren't completely in a shaded area.

    Just take the proper precautions like the others said and I hope you have a wonderful time. Take care and let us know how it goes. You will be in my thoughts and prayers.

                                                             Babs

Posted 4/14/2008 7:37 PM (GMT 0)

I was just out getting my lunch and it is extremely hot here. Just from the short walk to and from, I have the beginnings of a rash on my face and also my forearms.. I put on 50 sunblock today too. It is an overall sensitivity.. sort of feels itchy but more like the beginnings of a burn, and I rarely burn.

My advice.. stay out of the sun no matter how strong you think the rays are.

Ti

Posted 4/15/2008 11:35 AM (GMT 0)
Ditto on what everyone else has has said. I live in the southwest and I am now finding myself only going out in the early morning before the sun comes up and the late afternoon. I slather myself in 50 plus sunscreen, long sleeves, and a hat for the drive home from work. My skin has become a major part of my lupus involvement in the last few months and unfortunately plaquenil makes me even more sensitive to the sun. When I get any sun (and I mean a minute amount, I get an itchy rash - really itchy...then my joints start aching - all of them. It seems the sun keeps me in a state of flare lately, as it is nearly impossible to avoid it out here. I've never found myself wanting to live in a colder/cloudier environment until now. I've always been so cold natured and have intentionally moved to a warm sunny place - now I doubt my decision (of course I didn't know I had lupus until 1 1/2 yrs ago.
Posted 4/15/2008 2:31 PM (GMT 0)
Everyone has given you great advice. We're thinking about going to the beach, and if we do, it will be sunscreen, hats, long-sleeve shirts, long skirts, shade, shade, shade, and then some more sunscreen. Ten years ago we went to the same resort and I decided, what the heck, it's my honeymoon so I'm going to do whatever I want. I got a nice tan and a major flare. It just wasn't worth it. I'm so afraid of the sun that I avoid it at all costs.

Have a great vacation and stay out of the sun.

P.S. I even wear a large brimmed hat when I'm in the pool.
Posted 4/15/2008 8:00 PM (GMT 0)
Hi Mary, I agree with the others who stay in the shade . . . as even sunblock doesn't protect me from the sun making me eventually ill. It is a cumulative effect and I am one who really stays OUT of the sun. I recently went to Mexico (an oxi-moron isn't it?) but I purchased a UV skin suit and went swimming in the ocean!!! The suit worked well and covered from tips of hands to feet and I wore a hat (which was ruined in the water but worth it). If you ordered on online and had it shipped to your Father's it would likely be there when you arrive. I believe they sell for around $39 now plus shipping. I'll see if I can find a link for you. Blessings!
Posted 4/15/2008 8:02 PM (GMT 0)
Hey Mary . . . I got mine at LeisurePro.com . . . here is the link: http://www.leisurepro.com/Catalog.aspx?Op=dtSearch You'll need to copy and paste it into your browser. Good luck!! and blessings!
Posted 4/16/2008 12:29 PM (GMT 0)

Dear Mary,

Please, PLEASE do NOT be tempted!! Stay, oh please, stay OUT of the sun. Sunscreens make my rashing out worse, the itch intolerable, the flu like malaise ruins outings, sitting at the hotel sick is NOT fun and I learned the hard way. Trust me. Check out Coolibar on line for clothing that is UV protective. I think Lands End and several sports stores have it, too. I like big baggy light fabric sweats with long sleeves. I limit the sunscreen to my cheeks, hands and tops of my feet. Yeah, yeah, flip flops don't offer much sun protection, that' s for certain! cool I swim in long sleeve tees and my favorite vacation thing to do is sitting in the sun, true, picture the ocean, the beach, a lounge chair, and this gramma lying covered up with hoodie, sand, beach towel, while the surf crashes over me and my chair and I feel like I am in heaven. I also make sure my family knows I am happy when they go adventuring without me, because I have such exhaustion and weakness, sitting is about my limit. When we went to Disney World my husband and girls pushed me around in my w/c, not that I can't walk, but so I could conserve my strength. And DW is so disability friendly and their crew so helpful and respectful. And I got big, dark sunglasses that really helped reduce my headaches. Happy travelin,

p.s. I take a light weight polar fleece lap sized blanket with me in a tote to cover arms or legs when I am in cars or trolleys. Even the sun coming through the windshield made me so rashed and sick..... mad sue

Posted 4/16/2008 1:48 PM (GMT 0)
Thank you all for responding and great advice with the sun.I am so excited on going but in the back of my mind I'm saying Mary you know this isn't going to be good you should just stay home with my cats.You know they just don't understand what the sun can do to your body.But I am excited to see all my bro's and sisters it's been about 3 years since I've seen them really my husbands family.I know I'm going to be run down when I get home not looking forward to that either.


Thanks again,
Mary
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