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LisaBulman

Do you have digital (finger) ulcers?

6 posts in this topic

The scleroderma DISTOL trial is still recruiting patients who have active digital ulcers. Reposted 07/04/10. (Also see: DISTOL Trial)

 

This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.


Lisa Bulman

(Retired) ISN/SCTC List Coordinator

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Fundraiser

International Scleroderma Network (ISN)

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So Lisa - are you going to try this one too or have you already tried? You've done so many of these clinical trials that I've lost track. I know you're still dealing with ulcers. Any news from your last doctor's appointment on the next step?


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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HAHAHAHA!!! Been there- done it!!! I have lost track too! No more studies for now. I am just hoping for the surgery at this point. I go on Monday to see if I am eligible or if there are any blockages in my arteries.

 

Actually I will be at the hospital all day on Monday for an echo, pft, visit with rheumatologist and then visit with hand surgeon. Hopefully I will have many answers!


Lisa Bulman

(Retired) ISN/SCTC List Coordinator

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Fundraiser

International Scleroderma Network (ISN)

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Me too! (Fingers crossed, that is.) If it's a go, how soon do you think they'll schedule the surgery, Lisa?

 

If it isn't intruding, I'd be curious to know long have you been having the ulcers and how many do you average a year? I think there might be a fair number of us out there that know from nothing about them. Did they start after a particularly cold winter or come on gradually? I've only seen one person with digital ulcers and we ended up talking about motorcycles and grandkids rather than scleroderma. :)

 

I don't know how you do so much, between your family and the fund-raising and all for the ISN. Me, I'd be a basket case and agitating for a move to a warmer climate.

 

Big hugs and 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

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Thanks for the finger crossing!!!

 

Jeannie,

I have had ulcers from the beginning. My raynauds started first and I was diagnosed with sclero a year later. Some years I have more than others but this year seems particularily bad with ulcers on fingers that have never had them before and on both hands. It started with only my right index finger, then to my middle, noe to my third on my right and left hand.

Hopefully I can get to have the surgery before the weather gets cold and my kids schedules get crazy! Then again, when isn't crazy around here?

Hugs,

Lisa


Lisa Bulman

(Retired) ISN/SCTC List Coordinator

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Fundraiser

International Scleroderma Network (ISN)

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