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#1 Phalaeo

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Posted 13 March 2007 - 04:35 PM

Hi there folks-
I am looking for information for a friend of mine with scleroderma. He has no idea how to use a computer, but is suffering from a particularly bad digital ulcer and I told him that I would look online to see if I could get him the latest information. He was diagnosed about 20 (?) years ago and has sort of taken the sit back and let the ulcer heal for a year approach, whereas I like to look online to find the latest. I told him, hey, you never know- there's probably a whole bunch more to be done since you got diagnosis'ed 20 years ago!
So- here are the specs- any advice you can give me on where to look for answers/stuff to try, is greatly appreciated.
50 yr old male
Takes blood pressure meds (high)
Has CREST Syndrome (disorder?)
Fit, otherwise healthy
Only gets ulcers on his fingers, but has calcinosis (sp?) other places.

Anything to try?
Vitamin E tabs?
Photo therapy?
Sea salt soaks?

Thank you so much.

#2 Phalaeo

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Posted 13 March 2007 - 05:04 PM

Oh, forgot to ask this specific question-
Read somewhere that Vit. E gel is good for ulcers.
Does anyone have experience using this and if so, what brand would you recommend?

#3 janey

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Posted 13 March 2007 - 05:05 PM

Hello,
Welcome to our forum! I'm so sorry that your friend is suffering with scleroderma and has developed those painful digital ulcers. He a lucky person to have such a good friend!

We do have a section on digital ulcers and digital ulcers treatments. Hopefully you can find some helpful information. This info does represent some of the latest research and results. Based on what I have learned from this forum is that it's a matter of finding the treatment that works for the individual. There have been different successes with different people. I'm sure others will join in and share their experiences.

We have hundreds of pages of research so I'm sure you'll be able to find some information that will help.

Big Hugs to you and your friend.


Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)

#4 Heidi

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Posted 14 March 2007 - 01:37 AM

Hi and welcome to the forums!

I am glad you have found us, but sorry to hear about your friend. Ulcers and how to heal them is a topic that is discussed quite frequently here. I see Janey gave you some great links to information. Here is another link to a discussion we had here awhile ago talking about how to treat ulcers. Several members offered some suggestions in this thread. I hope you find the information helpful.

Again, welcome!

Warm wishes,
Heidi