Talking to rheumy nurse tomorrow, but after anything to try!!
Have used - heavy moisturizing lotion/creams, antibiotic ointments, honey, steroid creams (inc extra strength one,) pawpaw ointments, kept super clean, as dry as possible, under wrap, etc
Starting to have finger numb, change colour more often than not. Have Reynaud's too, but it's intermittent. Different.
Started as one, now two, plus a really small one starting to open up.
Any ideas?
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bengali
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Hi, are you on any treatment at the moment? I get really bad ulcers every winter. There are so many treatments out there, probably the best one is Iloprost, I'm sure the rheumy nurse will be able to suggest something. It's really important to stop them in their tracks before they get out of hand! Good luck, Xx
The only thing that worked for me (severe ulcers and a finger amputation) was the drug sildenafil (aka viagra). I had Iloprost and all kinds of other drugs but never enough circulation in my fingers for ulcers to heal. Three weeks on Sildenafil healed everything. It did have some side effects such as a rapid heartbeat, so I was not on it long term but would go back on it like a shot if I developed another ulcer.
I've a leaky heart valve so have said the sildenifil isn't an option for me, they talked about it briefly, then rheumys decided it was a no go. Have not done iloprost yet, maybe that will be their next step to try, ?
Hi, sounds like your doing all the right external things you can do.
Because of the Raynauds most likely your Rhemy will also give you something to take to work internally to prevent or lessen the occurrence of more ulcers.
I know it’s a painful process but your doing everything you can do. I also tried zinc impregnated bandage/dressing which also helps soothe the pain. An additional anaesthetic cream can also temporarily help with the pain (but that’s short term fix, but it may help you sleep at night).
Protect your fingers as much as possible, but of course that’s easier said than done. Hope you get some relief soon.
Unfortunately ulcers can take months to heal due to poor circulation issues. As well as having scleroderma and raynauds myself I work as a podiatrist so deal extensively with diabetics/ rheumatoid patients with leg and foot ulcers. It’s vitally important that you keep the area clean, dry and infection free by covering with a suitable ulcer dressing. A nurse dealing with wound care will be able to advise you on what they can prescribe. Many of the new dressings on other create an optimum healing environment and only need changed once a week (if no infection is present). Changing dressings to often can actually delay healing. Hope you get on top of them soon as know how it feels, take care x
Have you tried Haelan tape? I’ve had an ulcer for over a year (just got X-ray) n this is only thing that has helped. It still flares up hence the X-ray but I’ve tried putting tape on one day on one day off n it’s gotten it much closer to healing than anything else. It sticks on independently but I cover it with a porous dressing. Good luck
I use this tape too..it's prescribed by my dermy for finger problems..in the UK that is. I put it on before bed n then remove it in the morning..u can only wear it for 12hrs at a time.When my hands were really bad my dermy prescribed me strong steroid ointment (Dermovate) n told me to apply it to the ulcers n then wear some vinyl gloves during the night. I said won't that make me sweat? He said yes n that's what we want..the gloves will help to keep the ointment from coming off too quickly on clothing etc!! I tried it n it worked..n the other thing was that I could move around in bed without catching my poor skin on the bedcovers. So he was right!!
He also told me to wrap my feet in cling film which I tried but it's really hard to walk in sore feet covered in cling film n it's a bugger to get off!! 🌈😽😽Xx
Really interested to read this post. I have scleroderma and Reynolds. I have calcinosis in two of my fingers, one never heals properly and this year I have had so many antibiotics but still infection keeps coming back even using dressings etc. I have an appointment with consultant in July and hopefully he will suggest something to help circulation. At the moment I am on hydroxychloroquine and painkillers when needed. I attach a photo of my finger showing the calcinosis which is causing the problems. Hope you get something that will help and thanks for asking the question.
I have had them on my toes for years. Like you I wasn't given specific advice. I have Secondary Raynaud's, Scleroderma overlap, Sjogren's and a host of other autoimmune conditions.
I was bitten by a spider a few years ago and it bordered on sepsis. My son was told the surgeons might amputate my hand and I was told it was life-threatening. I was in IV for eight days.
I saw the nurses were dressing the wound with Inandine (an Iodine dressing) so I started using those to dress the ulcers and infections on my toes and it did heal them.
In 2019 I was referred to a podiatrist in the community as my Raynaud's was bordering on necrosis and, to my utter amazement, they use Inandine dressings and/or iodine spray on both ulcers and infections (I suffer many if both). It's worth a try
Additionally, perhaps you would benefit from Iloprost infusion. I couldn't get that in the pandemic and so was extremely grateful for the care given by the podiatrist.
On my last visit she told me iodine is used for all ulcers and infections.
Hope this helps. Inandine is available over the counter and you'll need to cover it with a Mepor dressing and not get it wet
In my experience the best way to treat digital ulcers is to soak them in hot water containing dettol. The heat acts to expand the tissues, a bit like a poultice, and the Dettol kills any infection around the wound and within the skin. Then wash off the oily residues, dry the finger, add a little bit of antiseptic eg Bactroban and then add a dry dressing. In the past I have tried hot salty water then dressed with patches of Inadine beneath a dry dressing but that did not stop the rot - which is one reason why my fingers are now twisted!
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