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Post by jeffn on May 26, 2016 20:00:43 GMT -5
I see we have a new member. I would like take the opportunity to welcome Berry1. Feel free to share a bit about yourself and your SD journey if you care to.
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Post by berry1 on Sept 21, 2016 18:24:19 GMT -5
Thank you for the welcome. I was diagnsed with Systemic Scleroderma about 18 months ago. I was initially diagnsed with Lupus and after undergoing so many tests I cannot even go into. Was finally referred to USC in L.A. last May and have been receiving photophoresis treatment at USC since July 2015. It has been amazing how much better I have become. When I started out I could turn a key or open a can or bottle. I could not even hardly dress myself. I can now do everything. My lower arms are still stiff and the skin is very patchy and hard, but other than the general fagique I am so much better. Anyone else here been having photophoresis? Would welcome hearing anyone elses experiences.
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Post by jeffn on Sept 21, 2016 20:23:11 GMT -5
Hey Berry1 thanks for your intro. Cubby founder of our board is on photophoresis and minocycline, she is doing very well. I will email her and let her know, I'm sure you guys could share some experiences. She has been on it a while. Really glad you are doing better my feeling has always been "anything that works" and you need to be your own best advocate. I have had good result with mino lots of naysayers but hey I feel well and am functioning much better than before.
Stay in touch.
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Post by christel on Sept 23, 2016 13:26:50 GMT -5
Hi Berry1,
I just heard from jeffn (out of town and unable to access this site), and he was in contact with Cubby. She is on the road and will be in touch when she gets home with the info about the photophoresis.
Hope she is able to help you!
Christel
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