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Photopheresis


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5 replies to this topic

#1 paula d

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Posted 18 March 2009 - 07:25 AM

Has anyone had a perma cath done to get photopheresis? I'm hearing alot of minuses and not alot of pluses. Any info would be greatly appreciated

#2 shennen0820

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Posted 18 March 2009 - 08:31 AM

I don't know about the perma cath, but am wondering about the photophoresis treatments. Have you had any done yet, if so any side effects, and any other info you can give me...please
Shennen

#3 Jeannie McClelland

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Posted 18 March 2009 - 09:33 AM

Hi Paula,

We've got a little bit on photopheresis on our completed clinical trials page. There was also a thread on the subject here. Shennen started the thread and there are two replies from Forum members who've actually had the treatments.

I'm sorry I can't point you at more specific information.

If either of you do decide to undergo this, will you post a message and let us know about your experience?

Best wishes,
Jeannie McClelland
(Retired) ISN Director of Support Services
(Retired) ISN Sclero Forums Manager
(Retired) ISN Blog Manager
(Retired) ISN Assistant News Guide
(Retired) ISN Artist
International Scleroderma Network

#4 paula d

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Posted 18 March 2009 - 10:50 AM

I was refered by a dermatologist to try photopheresis. But my skin is too thick for IV so I have to get a perma cath. I have heard that because of the scleroderma it is a risky procedure for infection.

#5 shennen0820

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Posted 18 March 2009 - 02:12 PM

the dermatologist that I saw explained to me that the hardest thing about this photophoresis is finding a vein with having the tight skin! So that is why I have so many questions about this treatment
Shennen

#6 paula d

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Posted 23 March 2009 - 06:05 AM

I can't have any photopheresis done until I get a 'perma cath' and insurance ok. From reading the information on photopheresis, it sounds like if you can get it done within 2 years of the onset of sclero that it really helps with the skin thickening.