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Sjoegrens and sensitivity to light or UV?


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#1 Monica38

Monica38

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Posted 27 August 2009 - 05:33 PM

Hi,
it has been a while since I last posted here.

I have morphea, the flare started on 2006 I guess, but this year, I started to have dry eyes, dry mouth and my Schirmer test indicated a problem.

I finally saw a good rheumatologist who did a lot of bloodwork. I'm seronegative, they say my health overall seems okay however, I have the classic Sjögren's Syndrome symptoms, dry eye and dry mouth..

They didn't push me into a lip biopsy. I dont feel like it anyway, however, for now I was not given any meds. I have to go back in a few months. I am not on Plaquenil, or other drug yet.

On the other hand, my dermatologist said last year, if I get more morphea, then I can try a new UV light therapy that he said will work great, or go on methotexatre.

I was excited that I could try UV to stop the morphea from keep going, but then I read somewhere that people with Sjögren's Syndrome can have reaction from the sunlight??? and also any UV light?? THat came as a surprise to me. What sort of reaction or problem could one get by being in sunlight??

Have anyone experienced such reaction?

Thanks
Monica in Pennsylvania.
Monica In PA
generalized morphea /probably + Sjogren's

#2 Jeannie McClelland

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Posted 28 August 2009 - 02:27 PM

Hi Monica,

It looks like no one with Sjogren's has had personal experience with an adverse reaction to sunlight/UV has read your post.

I have Sjogren's and the only bad effect from being out in the sun I've had is transient severe itching. That could be due to the drying effects of the sun on already dry skin, or I suppose it could be some sort of immune system reaction.

We've had articles in our newsroom on both the pro's and con's of UV exposure. Here's a link to one of the articles that talks about the immune system and sun exposure from the negative viewpoint.

On the positive side, it is my understanding that the exposure you have when undergoing any form of phototherapy is not full-spectrum, like being out in the sun is. I think only particular wave lengths are used. I'd ask your doctor about it before giving up the idea, though. In the meantime, here's the link to our Morphea Phototherapy Treatment page. Have a read for yourself and see what you think.

Warm wishes,
Jeannie McClelland
(Retired) ISN Director of Support Services
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International Scleroderma Network

#3 Bobby Dazzler

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Posted 28 August 2009 - 10:27 PM

Hi Monica,
I also have all the classic symptoms of Sjogren's with dry eyes and mouth. The eye specialist is reviewing me every six weeks and I have had to get new glasses twice in the last six months due to a significant change in the lack of vision in my left eye. I had never worn glasses previous to diagnosis six months ago.

As my specialist does not have a lot of knowledge about scleroderma combined with Sjogren's she is going to seek advice and see me in 3 weeks with a suggestion for meds.

I cannot say that I have a problem with sunlight all of the time only occasionaly do I have a problem and it is just too bright.

Like Jeannie I also get the itchy skin in the sun that feels all prickly and unbearable at times.

I know my advice is not much help but I can relate to your symptoms

Good Luck and Take Care