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Photopheresis Therapy


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#1 shennen0820

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Posted 10 November 2008 - 04:25 PM

My dermatologist is suggesting photopheresis therapy...I have read a lot about it but was wondering if anyone has had it done and how is worked plus if there were any side effects...he stated the hardest thing about this therapy is finding a vein with the hard skin!
Shennen

#2 canon

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Posted 10 November 2008 - 05:16 PM

Shennen,

Can't help with your question but wish you well.

With gentle thoughts.

Judy
A happy heart is good medicine.

#3 shennen0820

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Posted 11 November 2008 - 01:36 PM

I am very surprised that no one out there has replied saying that they have had this therapy...
Shennen

#4 Sweet

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Posted 11 November 2008 - 01:44 PM

Hey Shennen,

I do know we have several members that have had this done, but they may not have had the opportunity to log on, and answer you since yesterday. Be patient! :)
Warm and gentle hugs,

Pamela
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#5 shennen0820

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Posted 11 November 2008 - 01:49 PM

Sorry it is just that my insurance company approved this and I am trying to make the decision to have it done or not. The doctors make it seem so simple...they don't have to think about the long term effects of this therapy...it is nice to have this website to find out info and learn about all of these things...I feel like I am a sclero forums junky lately!
Shennen

#6 Sweet

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Posted 11 November 2008 - 03:22 PM

I can totally understand your anxiety over this! And I'm so glad you are a sclero forums junky! :)
Warm and gentle hugs,

Pamela
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#7 jefa

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Posted 12 November 2008 - 12:17 AM

Hi, Shennen. I have tried searching on various forms of the word. Pheresis by itself brings up discussion of plasma pheresis, which I don't think a dermatologist would be suggesting. Photopheresis is a treatment of the blood by light and does not appear to be used in scleroderma. I am, of course, not medically trained and may be missing something here. There are discussions of various forms of phototherapy, however, on our Morphea Treatments page.

Perhaps you could give us a little more detail (i.e. what form of scleroderma is to be treated). If I haven't already welcomed you to the Forums, let me do so now. :D
Warm wishes,
Jefa

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#8 shennen0820

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Posted 13 November 2008 - 03:50 PM

This photophoresis treatment is going to be used to help soften my skin...you are given a medicine called Psoralen, an IV is started, and from my understanding this medicine Psoralen reacts with a UV light as your blood is going thru the machine. The treatments take about 3-4 hours and in the beginning they do it 2 days in a row once a month. I guess they evaluate how you are responding to it by having you see an occupational therapist and seeing the dermatologist and the skin scores and all. Then they will adjust the amount of times the treatment is done based on the results. It is supposed to help the T-cells calm down and to stop making collagen (or at least slow the production down). I guess it is not an "approved" treatment for sclero but it has been done and they have seen some good results according to the dermatologist at Yale I saw. He basically told me that the hardest thing about the treatment is finding a vein with having such hard skin and getting the ins company to approve it....fournatuly for me my ins did approve it.

Thank you all for all of your help...I have found when searching for this that alot of information comes up PUVA treatments...
Shennen

#9 janey

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Posted 13 November 2008 - 04:32 PM

Shennen,
Here's a clinical trial on photopherisis and SSc:

A randomized, double-blind, placebo-controlled trial of photopheresis in systemic sclerosis.

Here's the conclusion:

Photopheresis induced significant improvement of skin and joint involvement in patients with scleroderma of recent onset; however, any effect when compared with sham treatment and a possible placebo effect may be modest.

Hope it works for you if you decide to go this route. Good luck to you Darlin'.

Big Hugs,
Janey Willis
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#10 shennen0820

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Posted 14 November 2008 - 07:58 AM

thanks...sounds promising
Shennen

#11 walt

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Posted 17 November 2008 - 12:45 PM

Shennen
I started photopherisis March 2008. Twice every 2 weeks. It was going so well -skin softening-that my pherisis doctor cut my treatment frequency to twice per month starting mid July. However by mid Sept. my skin condition was regressing so we are back to the twice every 2 weeks. That was 4 treatments ago and my skin has started to improve again. Softening and less tight. Still lots of other symptoms to be mindful of but they are all stable if not improved. My veins in my arms can handle the needles and the treatment is really quite relaxing after a while.

Walt

#12 mowingqueen1

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Posted 19 November 2008 - 08:56 AM

I did the photopheresis for three months. I have deep morphea but it is different than most. I have this from my back down both legs. This is a long and very expensive treatment. Side effects were that I was very tired they day of the treatment and they had a hard time keeping my blood pressure up during the treatment. It did not help me at all. There was no sign of any change at all. If your insurance will pay I would still go because everyone reacts different to treatments and meds. Good luck and keep us posted.

#13 shaz

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Posted 19 November 2008 - 10:00 AM

What is this?

#14 Snowbird

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Posted 19 November 2008 - 12:18 PM

Hi Shennen

I have no knowledge what so ever on this topic but I want to wish you good luck with whatever you decide to do.
Sending good wishes your way!

#15 paula d

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Posted 13 April 2009 - 07:52 AM

Hi, I was referred to this thread by Jeannie in answer to my questions in another thread.

I am having problems with getting my insurance company to approve this. Can you let me know what insurance you have and do you live in Connecticut? PM me please if you don't want to post here.

Thanks,
Paula