Scleroderma & Raynaud's UK (SRUK)
6,797 members3,215 posts

Digital ulcers....sssss

I'm glad to see that research advocates taking a proactive, preventive approach to treating digital ulcers. Also, I note that calcium channel blockers and ACE inhibitors are not the best way to deal with the problem.

I have found Sildenaflil a great help.

See here -

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Yes, sildenafil is good.

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Thank you tall-tim that's fantastically helpful! I'm about to go in to the RF for another iloprost infusion with super-painful fingers and was very interested to see that report. Thanks for sharing it.

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I'm on sidenafil as well. Seems to help. I have had 2 rounds of ileprost and I didn't think it helped at all. I'm now on my fifth round of chemotherapy for my digital ulcers and vasculitis. I've had five ulcers in the last 12 months I have had a horrendous time with them.

The Royal free hospital suggested chemotherapy I'm on cyclophosphamide.

My last ulcer on my finger which was at its worst when I started the chemo has healed brilliantly, still very tender at the fingertips because it's such new skin but I just have to be careful and I have far less pain I'm finally off my morphine patches which is brilliant.

Still take the tramadol though trying to reduce that now, down to for a day as of this week.

My last session is next Friday, 4 March. I do get side-effects from the chemo but it's been worthwhile.

If anybody else is been on chemo for ulcers I would love to hear from you as I don't know anybody else that is done this treatment.

The professor at the Royal free did say it's the last resort treatment for my condition.

So if you have tried everything from steroids, sidenafil, nifedipine, gabibenton, losartin, iloprost infusions and mycofenalate, and it's not working see if your rummy dr will refer you to the Royal Free hospital for them to recommend new treatment.

Wishing you good luck on the treatments that you're on and hope your conditions improve please let me know if anyone's on Cyclophosfamide as I'll be really interested to know if it helps you.

Take care and keep warm

T xx

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Hi had cyclophosphamide as well to try and help with ulcers but it didn't work for me x

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