The Sun and its affect on Sjogren's patients.

Posted by marnie52

4 Feb 2012

4 comments

I have Primary Sjogren's, Fibromyalgia and thyroid disease and live in a small town in country Victoria.
I have to travel about 75kms to get to a larger town for shopping, doctors and hospital visits etc. but each trip results in a flare that knocks me down for several days.
I was at my wits end trying to work out why. I have always had a fair degree of photo sensitivity, getting quite sick after a short time in the sun and been tested multiple times for Lupus with negative results.

A few weeks ago, in desperation, I put "Sjogren's" and "the sun" into Google and it came up with a Sjogren's Forum citing the same problem. The following is a reply from one of the Doctors that advises on the site.

********
"Flare-ups from the sun are reported to be associated with SSA antibodies. Personally, I have seen sun as a trigger of systemic symptoms mostly in Lupus. However, I spent some time on Sjs patient sites, and found alot of references to systemic flares from the sun......... (some irrelevant text deleted)
"Sun sensitivity does not require a rash. The theory is that UV light increases the breakdown of cells in the skin, which release more intracelullar molecules-like DNA and Ro/La ribonuclear proteins-thus providing more "antigens" for autoimmune antibodies to react to and thus trigger systemic symptoms.
dr c"

www.sjogrensforum.com/welco...
************
Having confirmed that I am not going crazy (well, not too much anyway) and it really could be the sun, I then went to a Lupus help site to find out how Lupus patients deal with it.
The most common suggestion was plenty of sun screen but unfortunately I also have an allergy to the zinc in sunscreen so that was out. Another suggestion was UV protective clothing. Being a size 26+, I knew THAT wasn't going to happen. A logical alternative seemed to be to make a cape from Solarweave fabric (which they recommend) that I could wear in the car.

To my amazement, I found, after days of web searches and phone calls, that UV protected fabric cannot be purchased in Australia.
I did, however, find a company in the US that sells it so I have four metres on its way over.
I intend to make a cape that velcroes at the back of the neck at one end and to the dashboard of the car at the other forming a tent (obviously I am a passenger not a driver LOL). Hopefully that will keep the UV rays off enough to make the journeys more acceptable.

Does anyone else have a similar problem? I would love to hear your suggestions for dealing with it.