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#1 shennen0820

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Posted 13 September 2008 - 07:46 AM

Hi I am newly diagnosed by a rheumatologist who sent to a dermatologist and the dermatologist has suggested photophoresis therapy. I was wondering if anyone has heard of this or has even had it done and what their outcome was
Shennen

#2 canon

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Posted 13 September 2008 - 09:39 AM

Hi shennen,

If you go to medical at the top of the page here, then under treatments for scleroderma, there are a few articles written on photophoresis. I have never had the treatment so I am sorry I can not help you personally. It sounds like your skin problems need some attention. Take care and hope the articles help you.

Judy
A happy heart is good medicine.

#3 jefa

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Posted 13 September 2008 - 11:24 AM

Hello, Shennen

Welcome to the ISN Sclero Forums. I am glad you have found us and hope we can offer some support. Perhaps you'd like to tell us a little more about yourself. Have you been diagnosed with scleroderma, and if so which type, etc. Without knowing a little more we can't be of much help. We are not doctors here, but we can, like Judy, point you in the right direction and share our own related experience. The page Judy refers you to is on completed Clinical Trials with positive results. This includes one article on photopherisis and others on PUVA/UVA-1 and Phototherapy.


Warm wishes,
Jefa

Carrie Maddoux
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(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

#4 Sweet

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Posted 16 September 2008 - 02:15 PM

Hi Shennen,

I don't have any knowledge when it comes to this, but I did want to welcome you to the Forums! Carrie gave you great information, I hope it is helpful.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#5 shennen0820

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Posted 16 September 2008 - 03:57 PM

Thanks for your warm welcomes...I am not really sure which type as the dermatologist was not really informative. First I started in about December 2006 with some soreness in my elbow, which I wrote off because I had a baby in July and was breast feeding I just figured it was from that.

Then it started in the opposite elbow so I went to see a hand/arm specialist who because it was bilateral sent me for labs and my ANA was slightly positive. I then began seeing a Rheumatologist who was treating this like RA. This past April my hands and arms were extremely tight and I made another appointment with the Rheumatologist but not until July and she diagnosed me with the scleroderma and told me not to look one thing up on the internet and that she going to set me up with an appointment to see a dermatologist down at Yale. I had to wait 11 weeks to see him and basically he did a skin biopsy (which he stated he only did to prove to the insurance company that I really have scleroderma), said that he suggested photophoresis therapy (which he said we better hoped worked), and said he would call in about a week with results. He did not schedule any follow up appointment or explain anything to me.

Just so you know my background I am an ICU nurse so I have a very little bit of knowledge about scleroderma but know how medicine works. I have found the John Hopkins website very informative and easy to understand. I have had an echo, ct scan of my lungs, and some lab work which has all been essentially negative with the exception of my ANA level which is barely positive. I ended up taking the ball into my court and from finding information on the web regarding which tests I should have done and then working with my primary doctor he ordered them (which I kind of felt the rheumatologist should of been ordering since I was waiting this 11 weeks to see the dermatologist). I still need to have pulmonary function tests and a barium swallow done. I have no GI symptoms...but do have some blood vessel changes to my legs (diagnosed by the dermatologist). I am just a little confused as to who should be in charge of this whole treatment. Should the rheumatologist be in charge because it is an autoimmune disorder or the dermatologist because the disease primarily effects the skin...also does the photophoresis therapy just target the skin issues or does it also affect the immune system. The dermatologist also when I was attempting to ask him who should be in charge stated that no doctors like to treat this disorder...whatever that was supposed to mean.

I am greatful for whatever information you can give me...

Thanks again Shennen
Shennen

#6 shennen0820

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Posted 16 September 2008 - 04:04 PM

Carrie and Judy thank you so much for pointing me in the direction...there is alot of information regarding the photo therapy.
Shennen