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Biomarker for Diffuse Scleroderma skin has been discovered!


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Started Light Therapy Today!


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#1 beedee

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Posted 22 January 2008 - 01:36 PM

Today was my first light therapy session and it went well! I hate change, and I was nervous about this, not knowing what to expect...
I was only in there for 2 seconds :o, but the duration will double each time. Hopefully this works! Just thought I would let you all know how it went!
Danielle

#2 Snowbird

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Posted 22 January 2008 - 02:12 PM

Hi Beedee

Glad it went well for you, that's always a nice change when you're unsure, isn't it.

I'm curious, what is the maximum time they will do this for as you keep doubling your times?
Sending good wishes your way!

#3 Jordan's Mommy

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Posted 22 January 2008 - 02:55 PM

when you get the chance, will you please detail what the light therapy procedure involves?

thanks!
jennifer

#4 beedee

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Posted 22 January 2008 - 05:12 PM

Hello again!
I am so happy it went well, there's no reason why it wouldn't have, but I hate not knowing what to expect! It stresses me out!
As for the maximum time they will do it for, I really don't know, but I do know how they determine it. Apparently the procedure will make you "red" and it lasts about 8 hours. They will know I am at my "limit" when this redness lasts much longer than the 8 hours, and then we won't increase the time anymore. I am extremely fair skinned with red undertones (think rosy cheeks :( ), so I don't think it will take very long to get to this point.
As for the procedure, it is quite simple. Mine takes place in the Physiotherapy department in the hospital and it is administered by a Physiotherapist. Mine will be 3 times a week for 12-ish weeks. Not sure if my dermatologist will want to continue it after I see him in April or not. Anyways, the physiotherapist sets the time and settings. I just had to undress the affected areas and go into this booth. I had to wear UV glasses and close my eyes as well. When I closed the door, it starts, and then it just stops when the time is up. Pretty simple and quick. I only noticed a bit of redness this time, and I am sure it will show up more as the time increases. I go back tomorrow and Friday. If you have anymore questions, just let me know! :)

Danielle

#5 Michelle2

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Posted 23 January 2008 - 08:43 AM

Hi Denielle~

What is the light therapy for? Is this the same as the PUVA therapy? I've just been referred to a dermatologist to start the PUVA treatment on my hands. I have super tight and thick skin on both my hands. It's so bad now that when I try to make a fist, I hand can only curl into the letter "c" shape.

Thanks for the info!
Take care and stay warm,

Michelle

#6 KarenL

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Posted 23 January 2008 - 02:27 PM

My husband uses a UVB light therapy machine for exzema, and insurance paid for us to have one at home! You might want to check with your insurance, because it might be worth it to them if you'll be going steadily.

He uses it for only up to two minutes tops. By evening on those days he's red and by the next morning he's back to normal. It's not really helping his skin, but then again he doesn't do it the way he should. What are you using it for and what is the protocol? Sounds interesting. I wonder if it would work for Seasonal Affective Disorder?

Let me know...
Karen

#7 beedee

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Posted 23 January 2008 - 05:27 PM

The UVB therapy is for morphea (localized scleroderma). With morphea, it stays mainly in the skin, and I have morphea spots on my hand, arm, breast and above my breast. They have a bruised/discoloured appearance and are thickened underneath. It started in my breast around April and has spread a fair bit since then. I am on four different ointments besides the light therapy.
I am pretty sure UVB and PUVA are used similarly. I guess it just depends on what is available in your area.
The machine I use at the hospital is a booth. I have a good few spots and the booth treats them all at once.
I am doing they 3x weekly for 3 months. I really hope this helps my morphea.

#8 Michelle2

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Posted 24 January 2008 - 05:32 AM

Thanks for the detailed info.
Take care and stay warm,

Michelle