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

[sclerodermauk]

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

[Kc_1411]

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

[SRUKadmin Partner in reply to Kc_1411]

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

[Hidden]

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.

[X-Woman]

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 high dose Opolon (probably spelt wrong) along with high dose Adalat 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 Opolon since either. I did stay on the Adalat for a good few years later though.

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

[SRUKadmin Partner]

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."

[overnighthearingloss]

A couple of years back at Easter I attended a&e as the pain from a badly infected ulcer had become unbearable. The doctors I saw suggested at least opening and debriding the wound but also suggested possible amputation. But they said because it was Easter I would have to return as there was no chance of getting it done during the Easter break.

I am glad it was Easter. I eventually got it to heal using Manuka honey. I know this works but I am often slow to use it as it's a bit messy.

But I still have all my fingers even though it shows they have been through the wars.

[Hidden]

Debriding hurts. This week tried petroleum jelly with latex gloves overnight. The hard spot was gone. Years ago the clinic used electrical stimulation to incease blood flow for healing. Worked. So I bought one to use as needed. Canada OK. USA need a prescription to buy one. Don't know about the UK. Helps other things to heal also