Posted 29 May 2009 - 09:44 AM
Posted 03 June 2009 - 11:31 AM
Posted 04 June 2009 - 04:50 AM
I am so glad that the perm cath went better than you had anticipated.
The unknown really can make us feel uneasy, that's for sure!
I so hope this all brings about a positive outcome for you.
When you are feeling up to it, please let us know how you are doing?
Posted 05 June 2009 - 10:45 AM
How did the photophoresis go? Just great, I hope! I'd be really interested to hear all about the treatment, what it was like and so on, if you'd be willing and able to share.
Big hugs and warmest wishes,
(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
Posted 20 June 2009 - 04:29 AM
Just some words of encouragement. I have been receiving photopherisis treatments and they have definitely helped with my skin and joint stiffness. Neither symptom has disappeared but noticeably improved. Also just my general feeling of well being has inmproved. My diagnosis came two years ago as systemic diffuse. I was 60.
I am always amazed that photopherisis in not more commonly prescribed. Maybe cost, maybe accessibility?
Please feel free to ask me questions.