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Sjogrens Topics => Living With Sjogren's => Topic started by: Deb 27 on July 02, 2017, 07:34:48 AM

Title: How much sun protection
Post by: Deb 27 on July 02, 2017, 07:34:48 AM
So, for those of you who are sun sensitive, how do you protect yourself to keep from going into a flare? How much sunlight does it take to make you have a flare?  I've been  outside just a little bit and am having a flare. I was under an umbrella and in the shade, so I don't get it.    I've also been swimming in the shade with an SPF shirt on. This is the worst my hands and feet have hurt in a very long time ( they tell me I have seronegative RA).  Today, I will make sure I  have sunscreen on along with my SPF shirt.
Title: Re: How much sun protection
Post by: Sooki on July 03, 2017, 08:10:54 AM
There are times when I'm very sun sensitive.  The last lupus conference recommended that sun-sensitive patients wear 100 SPF whenever outside.  I do that, along with a sun protective hat (no holes in it like straw).  SPF clothing.  Some times even gloves.

In my gear, I usually can walk in indirect sunlight, shade, sunlight only in short spaces.  Even with that, I try not to get into direct sunlight.  If I'm on a reflective surface, the UV bounces off the surface and reflects on my face. In fact, this is probably the most harmful UV for me.   In my gear, I usually can walk in indirect sunlight, shade, sunlight in short spaces.   I wouldn't go swimming in the sunny part of the day (unless it's in the shade - strictly hypothetical for me).  When the sun starts to go down, I can be a little more relaxed.  And when the sun goes behind the trees, I can get rid of my long sleeves - it feels great.  In the northern latitudes, after-sunset light lasts for awhile.  Also, predawn is over an hour as well but pretty durn early.

If I fall short, my face gets red pretty quickly.  And then in a few hours, I start getting bumps on my face, and the systemic inflammation stuff starts the next day.  I take a lot of high quality fish oil and that really helps the inflammation (1 T Nordic Naturals omega-3 oil) and the rash goes away in a few days.
Title: Re: How much sun protection
Post by: Joe S. on July 03, 2017, 09:55:50 AM
SPF 400 sunglasses, SPF 40-50 big floppy hat, SPF 40 pants, SPF 40-50 long sleeve shirt and finding as much shade as possible. I also have copper compression gloves that help. I have suction cup screen for the side window of the car to reduce UV. 
Title: Re: How much sun protection
Post by: Deb 27 on July 08, 2017, 09:04:58 AM
Thanks for your responses, I really appreciate it Joe and Sooki. Sometimes it is good to know your re not the only one. I did get some 100 SPF by Neutrogena sunscreen. I am going to get some SPF clothes. They are pretty pricey but I think this store is having a sale here around the 4th of July. Hope I didn't miss it.