The Sun and its affect on Sjogren's patients.

[marnie52]

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.

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"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"

sjogrensforum.com/welcome-t...

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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.

[cheryl_av]

Hi

This is a very interesting topic thankyou for posting are you taking plaquenil? because that can also make you sun sensative,I find that i am a lot more sun sensative that what i have ever been, but i dont know if it is due to the plaquenil or sjogrens I can't say that i have noticed it brining on a flare.But looking at your research it dose sound very possible. Have you thought about getting the windows tinted in the car,the tent dose sound like a great idea.

Good Luck

Cheryl

[marnie52]

Hi Cheryl,

yes I am on Plaquenil. I did ask the chemist and he said that Plaquenil would make my skin more sensitive to sunburn so to make sure I was covered if I went out in the sun. I must follow that up and see if it causes more than sunburn - thank you!

My own photo sensitivity started long before I was diagnosed or started Plaquenil but it has certainly become worse over the past two or three years although I have been on Plaquenil for about seven years now, so it may be cumulative. We do have tinted windows but the there are laws about how much windscreen tint you can have so they don't help enough

Many thanks for your input,

Marnie

[shaz59 in reply to marnie52]

Hi Marnie,

Thank you for bringing this up as an issue. I too have had a sensitivity to the sun since i was a child but it has been a lot worse in later years. I am also on Plaquenil and wasn't aware that it can affect your sensitivity to uv rays. I have also had problems with uv lights, i feel sick if i am under them for too long, supermarket lighting can make me feel sick. My husband thinks it is all in my head but from what your saying it may not be. I think trying to live with a syndrome is a challenge and a lot of people don't realise that it is a combination of many symptoms.

Regards Sharon

[Butterfly54]

Hi I am a newbie to this but am very very interested in what you are saying about sun.

As a child I had no problems,went to south africa at the age of 20 sun worshiped and it was blissful.Came back to U.k age 28 and couldn`t sit in sun as I got blisters.

Also at this time lost 3 babies,kept slipping discs and eventualy had to have one removed.Ihave scoliosis,osteo arthritis, reynouds (severe) thyroid,ibs,restlest legs,OH yes and the swine Fibromyalgia.

Bored you rigid haven`t I LOL.They say God doe`snt give you more than you can handle,well I`m telling him now we have had enough thankyou and if you don`t stop it I won`t talk to you anymore.Bet you feel the same

Think this site will be as good as thier one for fibromyalgia which is growing by the day and is a life saver.

I am so pleased to meet you all

Hugs Butterfly54 xxx