Comments on: Routine Maintenance https://livingwithscleroderma.com/routine-maintenance/ Reflections on the Messy Complexity of Chronicity Mon, 08 May 2017 20:02:46 +0000 hourly 1 https://wordpress.org/?v=6.9.4 By: Evelyn Herwitz https://livingwithscleroderma.com/routine-maintenance/#comment-58866 Mon, 08 May 2017 20:02:46 +0000 http://www.livingwithscleroderma.com/?p=4633#comment-58866 In reply to Charlotte Diep.

Hard to say, Charlotte. I can’t definitively say that it’s reduced the number of ulcers, because they are so chronic. I do think it has mitigated worsening of my exercise induced PAH. No negative side effects for me. I have routine liver function tests and they have always remained normal, thank goodness, for years.

]]> By: Charlotte Diep https://livingwithscleroderma.com/routine-maintenance/#comment-58772 Wed, 03 May 2017 10:43:58 +0000 http://www.livingwithscleroderma.com/?p=4633#comment-58772 Hi, how do you think taking Tracleer (Bosentan) has helped you with the digital ulcers? And did you have any side effects with a long term use? Thanks.

]]> By: Evelyn Herwitz https://livingwithscleroderma.com/routine-maintenance/#comment-58766 Tue, 02 May 2017 14:44:17 +0000 http://www.livingwithscleroderma.com/?p=4633#comment-58766 In reply to Pat Bizzell.

Thanks, Pat. I’ve seen those devices. Will check it out!

]]> By: Evelyn Herwitz https://livingwithscleroderma.com/routine-maintenance/#comment-58765 Tue, 02 May 2017 14:43:41 +0000 http://www.livingwithscleroderma.com/?p=4633#comment-58765 In reply to Evelyn Driscoll.

Thank you, Evelyn! I have not heard of this treatment. Will have to research it. I hope it works for you! Thanks for your support.

]]> By: Pat Bizzell https://livingwithscleroderma.com/routine-maintenance/#comment-58762 Tue, 02 May 2017 14:10:41 +0000 http://www.livingwithscleroderma.com/?p=4633#comment-58762 I am so sorry you have all these issues to deal with, Evie. Regarding the back pain, David has chronic problems with it, too, and has gotten some relief from placing a TENS pack on the afflicted area. Most drug stores carry this device, which delivers a sort of micro-massage. (In fact, we learned about it from our therapeutic masseuse.) I’ve probably already touted the benefits of chiropractic to you, as well. Nothing else relieves my chronic arthritis pain.

]]> By: Evelyn Driscoll https://livingwithscleroderma.com/routine-maintenance/#comment-58761 Tue, 02 May 2017 13:52:12 +0000 http://www.livingwithscleroderma.com/?p=4633#comment-58761 I also have multiple digital ulcers from systemic sclerosis. I have just started getting amnionic fluid injections followed by dressing with amnionic membrane at the University of Utah. These are done by a burn specialist/surgeon who has had great results with burns and digital ulcers. It’s too early to tell for me.
I was referred to her by Dr Tracy Frech, scleroderma specialist. Perhaps this is available for you?
Hang in there.

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