How do you manage your Digital Ulcers with Scleroderma or Raynaud's?

How do you manage your Digital Ulcers (sores on your fingers and toes)?

Our SRUK specialist, Prof. Denton says "Ulcers over the tip of the fingers are especially difficult and may lead to severe pain. Treatments have improved and include drugs to open up blood supply including Iloprost given as a “drip” over several hours at a time, usually for 3 to 5 consecutive days. Other drugs include tablets of Sildenafil and in some cases Bosentan, which is used to reduce development of digital ulcers in severe cases."

Find out more about how to manage your digital ulcers at: bit.ly/2g4ww5K

5 Replies

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  • In my personal experience I would recommend the iloprost.

    I had a infected ulcer and was told to have the treatment to help with the healing. It helped a lot and since having these treatments I hardly get any ulcers any more.

    If u do get an ulcer just keep it clean and covered try not to hit it as pain is unbearable.

    As for the sidenifil it was too strong for me so I didn't stick to it but I would recommend the iloprost. Spending time in hospital is horrible but it has to be done

    Hope this helps x

  • Thank you for your detailed reply. This is really helpful. I hope you've managed to find a way to cope with ulcers. Thanks

  • Niacin, Twin Labs brand, 500 milligrams taken 3 to 5 times daily works well and is safer than any prescription medication. Do you have a "Vitamjn Shoppe" in SRUK? Use pocket hand warmers, heating pads and do not drink any caffeine. Do not take antihistamines, they make raynaud's worse. Take vitamins.

  • When I was diagnosed with Raynauds going on 30 years ago, my hands were riddled with open ulcers that refused to dry or heal. Aftet trying lots of different meds, I was put on Option (probably spelt wrong) and within 3 months all ulcers were gone, just red marks remained, the red scaring remained for around 5 years. Some 25+ years later I've not had another single digital ulcer and not needed to take the option since either.

    Certainly worth a try as there are no side effects, not that I'm aware of anyway.

  • One of our community sent this in and wanted to let everyone know - "I have had several digital ulcers, all cured. The specialist wanted to take the infected fingers off ( I would have lost four to date!) I was told that they wouldn't heal. What assurance did I have that if they amputated the digit it would heal then? I persevered and said no to the amputation and I knew my body and was sure with help they would heal. I was given amoxicillin and the nurse at my surgery treated me with a dressing of manuka honey and latterly a silver dressing. My fingers are excellent, much to the amazement of the surgeon who wanted to take them off! He did at one time take about twelve calcium pieces out of one finger reluctantly, saying it wouldn't heal. I have been taking vitamin D and B12 injections and have had no more calcification or ulcers. I thought you would be interested."

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