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Susil

Raynauds digital ulcer

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I am in so much pain with a digital ulcer. Developed about 2.5 months ago. The tissue has died.

 

Can anyone suggest what I can do speed up healing process. Constant burning and painful. I had iloprost infusions but reacted badly to it. 

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Hi Susil,

 

Welcome to these forums!

 

I'm sorry to hear that you're suffering so much with digital ulcers. It must be very painful and unpleasant for you and thankfully, although I do suffer with Raynaud's, so far I've not had the dubious delight of painful ulcers. :wink:

 

I've included a link to our medical pages on Treatments for Digital Ulcers and Raynaud's, which includes preventative tips to assist with the condition. I hope this will prove helpful for you.

 

We do recommend, if possible, consulting a listed scleroderma expert; I do realise that this can be problematic in countries where it's not so easy to find one, so I've included our world list of scleroderma specialists.

 

Kind regards,


Jo Frowde

ISN Board Member

ISN Secretary of the Board

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Susil, welcome to Sclero Forums!  I'm very sorry that you have a painful digital ulcer.  Please try to see a listed scleroderma expert, from the link that Jo gave you. Even if that's not possible, please keep going back to your doctor until it resolves.  See if there are any "wound treatment centers" in your area, as those centers specialize in the treatment of wounds.  See if there is a larger medical center or university hospital that you could go to.

 

The thing with digital ulcers is, if they are not healing, then they are getting worse. With scleroderma, digital ulcers can lead to amputations. Everything and anything that helps improve circulation may help assist in healing. Which means removing all sources of vasoconstrictors, such as caffeine, nicotine, alcohol, chocolate.  Staying warm from head to toe is critically important.  (Also see Raynaud's Prevention and Treatments for Digital Ulcers)

 

Iloprost side effects can be very uncomfortable, but often they are treatable (such as anti nausea or anti diarrhea medications) and for most of us, preferable to gangrene/amputation.  There are also many other treatments! It can be very painful and unpleasant to heal a digital ulcer.   Please let us know how you are doing, and what steps you are taking to encourage the healing process.

 

:hug-group:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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