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Jordan's Mommy

UVA/UVB/Phototherapy

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Hi all,

 

My daughter's rheumatologist called me at home yesteday to let me know she had spoken with my daughter's dermatologist (we haven't seen him in a year) to get his opinion on light therapy and linear morphea/scleroderma. He said he has patients as young as 6 receiving the light therapy with positive results. My daughter will be 8 in September, so I have a few questions for those of you who are getting this form of treatment. I hope you can answer!

 

1. What kind of light therapy are you getting?

2. What is it supposed to do?

3. How long does each session take?

4. How did you get it covered by your insurance? (the dermatologist only takes cash--no insurance)

5.Do any of you have a take home device to do it yourself?

6. Any other words of advice or suggestions?

 

Thanks!

 

Jennifer

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Hi Jordan's Mommy,

 

I had UVA light therapy for 8 mths and it softened my skin and improved my skin pigmentation. It did not completely get rid of it, as I still have some pigmentation issues, but the areas are really light now and most people dont even notice.

 

I believe UVA therapy has been proven to slow and even stop the progression of excessive collagen production/skin tightening when used in the very early stages of scleroderma. It has also had great results with Morphea.

 

The sessions start at about 2 minutes and increase over time, usually no longer then 25 minutes. The UVA bed looks exactly like a tanning bed and it does make you tan. I went 3 times a week for 32 weeks.

 

I did my treatments while pregnant with my son and had no issues. My insurance paid for the treatments and I just paid a copay which was $5. I am surprised to hear that your doctor doesn't take insurance. I would look into other doctors. that have the light therapy and see if they accept insurance.

 

I wish your daughter the best.

 

R

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Hi Jennifer!

I have been thinking about you and your daughter in the past few months, wondering how that appointment went, that you travelled to New York (I think) for. I don't come on these boards too often, so I probably missed the update if your posted one.

Anyways, I have been doing light therapy since January. So here are my answers to your questions!

 

1. The type of light therapy I am getting is UVB light therapy.

2. I am assuming it is supposed to suppress the immune system somehow. To be honest, I am really not sure, exactly how it does work.

3. The session length increases over time, as well as the intensity level. They increase it gradually. I started off at just 2 seconds and am just over 2 minutes now. I was up a bit higher, almost 3 minutes, but I was gone away for a few weeks and they had to reduce it again.

4. I live in Canada, and this is provided on my provincial health plan, so seeking insurance coverage does not apply to me.

5. My morphea is not in one small area, so I have to use a booth. There are handheld machines though, I think.

6. Just to be VERY careful with regards to burns, I have gotten some pretty bad sunburns since I started the UVB therapy, so you have to keep a very close eye on it.

 

And I just wanted to let you know, that although this may sound discouraging, but I have been going for 7 month and am yet to see much with regards to improvement. I am also doing steroid and immunosuppressant ointments, and rounds of 20+ steroid injections every 6-8 weeks ( ouch!!! ). I am yet to see much improvement. But, I have heard that UVA light therapy is more effective than UVB.

 

The next time I see my dermatologist, I will be asking him if I can stop the light therapy. It just seems to be a lot of skin damage for nothing, as I don't see it doing anything. He did say before, that even though there seems to be no improvement, he thought it was preventing new spots, but I am tired of the sunburns... We'll see what he says anyways...

 

If you have anymore questions, don't hesitate to ask me!

 

Take Care!

 

Danielle

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Hi there,

 

First of all, I received SUP lighttherapy for 10 weeks. SUP comes from the words Selective Ultraviolet Phototherapy I guess.

 

Second, it improved my pigmentation changes a lot, I got more relaxed and you know, in general, it just felt nice. :D I´m not exactly sure what it was suppose to do, but since it didn´t do any harm and we noticed improvement on pigmentation with my dermatologist, we thought it was good. :)

 

The first session was 1 minute. Everytime, we added one minute more, but the longest session is 15 minutes. Have you ever been to solarium? The machine was pretty similar. I just laid there for 15 minutes in the middle of school day, relaxed and enjoyed it.

 

About the insurance.. Well here in Finland it´s really different. But when I turned 18, I paid 6 euros for one session (or my dad paid).

 

I didn´t have to do anything at home. I just went to the hospital 3 times in a week, and I was glad cause I could arrange my sessions according to my school timetable.

 

We´ll see if I will continue my sessions on the fall, when I return to Finland. But since I´m in Spain now, I get a lot of sun, and my skin doesn´t get burned easily, thanks to SUP. For me, it helped a little bit and brought a little hope into my life. :)

 

Take care,

Emmi

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It's probably worth mentioning too, that the light therapy I do, is in a stand-up booth, and not a bed. And there is a HUGE difference between UVA and UVB... I think UVB is what causes the burns at the surface of the skin, while UVA goes much deeper. Probably why UVA seems to be more effective...

 

Danielle :)

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