View Full Version : Question About the Sun and Lupus

01-24-2009, 05:15 PM
Hi everybody,

Though I have a dx of lupus and Sjogren's I don't have any problems with the sun at this point. I always wear sun block and a hat if I'll be out for any length of time, but on our last vacation we were outside a lot and there was no way to avoid the sun completely. I know I got a lot of sun because my face was red briefly and I got a tan on my legs for the first time since I was a child. However, I had no ill effects from all that sun. Does that mean I don't have to worry about it? I'm going to visit family in Florida for a couple of weeks and wonder if I need to go to any extra lengths to avoid the sun. Can the disease be progressing or can I be affected by the sun in some other way even if I don't feel it? Are the only people who have to avoid the sun the ones that get ill or get rashes?

Thanks for your help!

01-24-2009, 06:03 PM
Lupus you'll find is different for eveyone.... there are times when i can be in the sun all day and be fine. Then other days spend only a few hours in the sun and feel lousy the rest of the day (sometimes longer). Thats the ohhh so fun part of Lupus no day is ever the same. Good luck and keep taking precautions and rest when you need to for as long as you need, in the end if you do what your body needs the most, usually the better you'll feel.

01-24-2009, 09:05 PM
Hi Jesse,

You should still take all of your usual precautions regardless of how you feel. I know it's a pain in the butt, but the potential for triggering a flare is far too great to let your guard down. Do not go without your sunscreen, shades, and your hat. Protecting yourself against the sun is like mounting a pre-emptive attack on a formidable enemy. If your attack is a success, you'll never really know how bad it might have been. If you ignore it, it can be pretty bad. There's no harm in over-protecting yourself from the sun. However, the consequences of not protecting yourself properly can be severe.


01-25-2009, 10:48 AM
I agree with Rob, Jesse

Better safe than sorry. That would be a rotten time for you to start having troubles.

Some of the medications we take make us even more sensative to the sun. So check the print outs of your perscriptions and make sure that's not listed as a side effect.

Broad brimmed hats, good sunglasses and cover up. Hugs shadows where possible.

01-25-2009, 11:24 AM
hi jesse,

i am very bad about neglecting protection. However, when in florida, i strongly recommend that you boost the preventive treatment. I was there in january, and could still feel how much closer the is. if you feel a burning sensation that feels more like someone is reflecting the sun to a particular part of your body.....then you are feelling the effects of exagerated sun rays. please be careful in florida....i promise it is different.

share a smile today,

01-27-2009, 03:28 PM
Well put Rob!

I am a boater. I always wear the highest sun block possible even one that is waterproof. I also try to stay under the bimini top. It drives my family nuts to be under the top so I tell them to get in back if they want the sun. I am at a point in my life where I do not need the direct sun so I do like rob said...I do not want to know what it will do to me.

Have fun in Florida!!

01-27-2009, 03:58 PM
Hello Captain,

I'm a boater too. I live on the coast of Maine not far from the Maine Maritme Academy. I have an older Pearson 30ft Cruiser I keep in the marina here during the summer. I'm also into ocean kayaks. The Coast Guard Tall Ship "Eagle" is a common sight in the summer, as well as a couple of 4 mast schooners that are owned locally. They are a beautiful sight under full sail. With all the bays and inlets we have something like over a thousand miles of coastline. There's alot to explore. Although my pearson has a 444sq ft mainsail, I usually run under power and hide under the bimini top I had made for it. I keep this gallon jug sized dispenser full of spf 50+ sunscreen lashed to the deck always within easy reach. Risking any sun exposure just is not worth it. The last time I had a sun related flare, it was hell. Fortunately that was when I was first diagnosed, and I've since made avoiding the sun just part of my everyday routine wherever I go.


01-27-2009, 04:17 PM
Hello rob,

We have a 25 ft cruiser that we keep at the marina in St Joseph Michigan. We mainly use it for getting away from the kids and animals which sometimes can get confusing which is which LOL. We only put about 6 hrs on the engine last summer cause of the cost and the waves were really bad. That amounted to about 3/4 tank!

I am looking to add a 14-16ft jet boat this spring so I can explore other lakes when the big lake is too rough. I would not give boating up for nothing. Last summer I did get too much sun and I paid dearly. Well I better go...we can compare more notes at a later time.

Great! Now there is something positive that I can talk about also other than me having a good day!