The main thing that impinges on my day-to-day living is finger ulcers. Any suggestions how to help the ulcers to heal?

[nannysue1950]

I have Raynaud's and scleroderma and the main thing that impinges on my day-to-day living is finger ulcers. I have regular iloprost infusions and have just started to try viagra (no sniggering) to help with circulation. Any suggestions how to help the ulcers to heal?

[zenabb]

What does your consultant or your specialist nurse say about your frequent ulcers apart from Iloprost? For me Iloprost seems the only option and sometimes I am given antibiotics. But the ulcers take a very long time to heal. I would like to ask you what is your experience with Iloprost? I get extremely tired for days before I feel better.

[nannysue1950 in reply to zenabb]

I have been having iloprost now for about 11 years and although it helps I'm not out of hospital long before the ulcers reappear. I find I can tolerate the iloprost really well - I usually have the infusions over 5 days for 12 hours overnight and then I'm free the next day to do mostly what I want - the nurses are quite happy for me to go off the ward for the day as long as I'm back for my next infusion that evening. I'm sure my ulcers are no worse than anybody else's but as well as being painful they are such a nuisance and make lots of things awkward to do. I do seem to have rather a lot of antibiotics over the course of a year which I'm not that happy with but there doesn't seem to be any other choice.

[Anteater]

Hi nannysue1950, I suffer terribly with finger ulcers the last one I had on my index finger started last October after my Iloprost infrusion in September. It was so painful I was getting to the stage where I was quite happy for then to cut the tip of my finger off - it felt like a volcano wanted to erupt from the tip. After numerous antibiotics from GP I eventually went in for my 6 monthly Iloprost - I went on intravenous antibiotics had MRI and Xray on my finger and found that the tip of the bone had gone so now my finger is shorter. Whilst I was in my Consultant arranged for me to see a plastic surgeon that used Botox in the hand. To cut a long story short, I was discharged with 6 weeks worth of Viagra one three times a day more antibiotics and a few days later I had botox in by hand. This was so so painful but it blocks the nerves which control the spasm of the blood vessel into the fingers. Some time after, the pain went I AM PAIN FREE...... The ulcer has dried but still there.....

[nannysue1950 in reply to Anteater]

I have never heard of using botox. Is this something you keep having to have repeated. Also does it stop you having any feeling at all in that hand?

[Anteater in reply to nannysue1950]

Hi, this is the first time I have had BOTOX in the hand - I have heard of other people having it at the hosp I go to. It DOES NOT stop any feeling in the hand or fingers although some people may have different reaction!!! I am due back soon to have it in my other hand then I think every 6 months. I think eventually they want to use it instead of ILOPROST because of all side effects when on it. No ill effects from it at all but I must say that it is VERY painful.... They do an assessment of the hand and fingers first and then you go back in 6 weeks or so and they do another assessment to see if there has been any improvement.....

[Hidden]

I've lost count of how many times I've had Iloprost, but it doesn't really work as well as hoped. That's just my personal experience.

It is just the viagra that you take daily, to help with your circulation? I'm on losartan and nifedipine. The consultant just 'upped' my losartan. Have your consultants tried upping the dose of your tablets?

[nannysue1950 in reply to Hidden]

I've been having iloprost infusions for about 11 years and although I don't think they are the complete answer I do find that they help get my circulation back into sync for a while and therefore my finger ulcers improve a little. I used to take losartan but I have fairly low blood pressure anyway and as these lower your blood pressure even more I found I was getting giddy spells so came off them. Never tried nifedipine. Just started on the viagra so can't really say if it is helping yet or not. Will keep you posted

[Steph]

Whilst it is not a medical treatment. I find soaking my fingers in warm almost hot salt water solution eases the pain and does seem to help the healing (maybe due to the saline disinfecting it). Hope it helps.

[nannysue1950 in reply to Steph]

I have tried this occasionally when my finger ulcers have looked really nasty and you're right it does seem to help a bit

[AHM42]

The Raynaud's & Scleroderma Association has a leaflet on skin care and digital ulcers which offers helpful advice. You could also try ringing their helpline and ask for advice which is always very informative.

[Naomi1]

I had 3 finger ulcers which were excruciating. They came when I was getting up to 15 attacks of Raynaud's per day. My doctor put me on Nifedipine and I have had steroids to calm down the systemic autoimmune disease which was causing the Raynaud's too. All I can say is that I really sympathise and that you should not give up hope as my ulcers have now healed. Good luck!

[lifeforce]

Sounds simple but Desatin diaper rash cream helps my finger ulcers more than anything. The zinc in it starts the healing. When I get the first soreness of one starting, I rub the cream on it and put on a band aid on overnight where it won't be bothered. Next day shower, do the same. My ulcers used to last an average of about 7 months, now they don't continue to develop and go away. Hope this helps.

[dawng8500]

My doctor put me on Revatio, which is really Viagra, for finger ulcers. The name was changed (and thus a much MUCH higher price) because it is being used for a condition that it wasn't intended for. It has made a huge difference; my ulcers, although still there, are quite managable, and I haven't had any new ones since being on it. I take it with Tracleer (bosetan).

[Deedee0523]

I have experienced the painful finger ulcers for a while. I read that also being under stress could bring the ulcers on. Controlling the stress level our bodies endure does help a lot which is very hard to do but helpful. In the meantime I need to find out how to manage the pain.