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Selective Ultraviolet Phototherapy


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#1 epasen

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Posted 25 January 2008 - 11:19 AM

I saw a dermatologist on wednesday. She wanted to put me in SUP- light therapy, and I really have no idea why. Has anyone else any experiences in these kinda things? Has light therapy ever helped anyone? I'm afraid to go, cause it will be like 3 times in a week which causes some problems for school.. dunno if teachers will let me pass courses if I'll be missing so many classes.

I hope it's going to help. Can it prevent sclero from spreadding, or what's the point in these kinda treatments? Getting the pigmentation lighter? What's the point of that? I don't want to get it lighter, I want to stop the progressing..

She also prescribed 2 different creams for me, Aldara again and this other one, Silkkis. She said that I should try both of them in different areas and then see if they'll make any difference. Aldara is really expensive here, and I know my parents are not too happy to pay that kind of money.

I was also really dissapointed, cause she was a new doctor, AGAIN. Within less than a year, after my papers were moved from childrens hospital from Helsinki to here, Lohja, I've seen 4 different doctors.
The first, rheumatologist said that she does not know anything about this. "Come back after 4 months." (Yea, I will, but I need some kinda treatment NOW?!) The only good thing she did was to send me to a dermatologist.
So I saw the second doctor, dermatologist. She was a good one, knew what she was going to do. A lot of meds, but that was the first time I received any kinda of treatments at all.
The third one was the actual rheumatologist, who said that I'm not his business, cause it's almost all about the skin. So I'll see him again after a year..
Now this one. I was expecting the same dermatologist than last time, but no. She has changed, again. This is really frushtraiting, cause all of the doctors are saying different things. Which one is right? This is really confusing me. I hope that next time this same doctor will be there again. Otherwise I don't know what I'm gonna do. But I must have some rights or at least something to say to this all?

Well anyway. Thanks to you all if you can give me any kind of answers.
Take care,
Emmi

#2 Sd53

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Posted 26 January 2008 - 06:26 PM

Hi, I don't know how hard it is for you in another country to get the doctors. I would hope you could get the point across through your family or some of the doctors you've seen, that you would like more help and less "run around" if you know what I mean. I haven't been on this forum too long, so I don't know your symptoms and diagnosis. If its like some of us with scleroderma, our skin and joints and sometimes other organs are involved. Is that what you have? The rheumatologists help with the joint involvement and prescribe what is needed for the pain and swelling, but maybe there aren't that many where you are located. If your dermatologist is the best doctor you can see, maybe its to treat your skin as it is now and then move on to other needs you have, I really don't know. Don't give up, try to keep talking to them and someone will get you what you need.

#3 Sweet

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Posted 28 January 2008 - 06:45 AM

Hi Emmi,

Your situation sounds so very frustrating. I'm so sorry. As a patient you have every right to accept or refuse any treatments. My gut instinct would be to tell you to ask for the doctor you feel comfortable with and go with their treatment process. Also, be very verbal with them, let them know how confusing all of this is for you and how everyone is giving different advice, and you just don't know what to think of all of that. That in itself may help them realize you need to stick with one doctor and give you care that you are comfortable with.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#4 epasen

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Posted 28 January 2008 - 07:02 AM

Thanks Pam and Sd53,

I think there will be the same doctor next time I'll go, after the SUP - lighttherapy. I'm just getting confused cause everytime I go I see a new face, and their opinions are a bit different every time.

We'll see how this will turn out.
Thanks
Emmi

#5 beedee

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Posted 28 January 2008 - 01:07 PM

Hi Emmi,

I am unsure what type of scleroderma you have, but I have morphea and I just started light therapy last week. So I may be able to help you understand this a bit better. I am assuming you have some sort of skin involvement and that is why they are recommending the light therapy.

My dermatologist also wanted me to do light therapy, I do UVB light therapy, and I am not sure what the difference is between that and SUP-light therapy. I was ready and willing to start this because my morphea keeps spreading and I have heard that it can work well. My dermatologist always tells me what is next if the current treatment isn't working, and it helps to know what to expect.

I go to light therapy 3 times a week at the physiotherapy department of the hospital in a city I live near. I only had my 4th session today, so I am still not sure if it will work or not and I am assuming this will take quite awhile. My first session was only 2 seconds, and now I am up to 10 seconds. The light therapy I get is very quick and doesn't take much time.

My dermatologist hopes that it will improve the spots I have now, and also prevent new ones.

I am also on 4 different ointments, 3 steroids and an immunosuppressant. 1 steroid is weaker and gets used on my chest, and the stronger ones get used on my hand and arm.

I'm sorry to hear about your doctor troubles, and I hope that things get better soon!

Please let me know what you decide regarding the light therapy, and let me know if you have any more questions!

Take Care!

Danielle

#6 epasen

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Posted 29 January 2008 - 07:05 AM

I've had linearic scleroderma with skin involvment since 1996. I think my doctor was hoping to improve the pigmentation changes that has already happened in my skin, and also prevent new ones. We'll see if this one will work.

I think we'll start with 1 minute, and it'll go up to 15 minutes. Pretty quick so too.

Thank you for your answer :) It helps to know that someone has had a similar kinda experiences. Let me know what the result will be! Good luck ;)

Emmi

#7 beedee

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Posted 30 January 2008 - 11:39 AM

Hi Emmi!
My dermatologist is also hoping to improve my current spots and prevent the new ones. I don't expect to see any improvement soon, I think that if it does work, its going to take awhile. I don't have really high hopes, but I will be very happy if this works.
I think that there is a difference between the type that you'll be getting and the type that I have been getting. I've been there 5 times and I am only up to 15 seconds. I would think that the highest it will go will only be 5 minutes or so. I do think its the same idea though.
I will definitely let you know how it goes! Good luck with it!

Danielle