Scleroderma & Raynaud's UK (SRUK)
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Finger tip ulcer help!

I have had a painful ulcer on my index finger which ran under the nail too. It took 6 months to heal, and has just had granulated/crust skin over the site. Last night I woke with it throbbing, swollen and with pus underneath. It is excruciatingly painful, worse than the first one. I'll see my GP tomorrow, and I have very strong painkillers, but I can't find a position to keep my hand in to help relieve the pain. Have any of you got any suggestions? I'm not sure if I should keep it raised, in a sling, or avoid using my hand. I work full time and can't afford to take time off, so I need any tips to make it as comfortable as possible.

I hate having scleroderma- the only people who have any idea of how it affects you are others who have it. Doesn't help that most people have never heard of it!

Thanks

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O God feel so sorry for you ....touch wood I've not had any ulcers sorry can't help you ..hate having this disease to hope you get some cream to make them go away x

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Thank you- one good thing about having SD is the support and kindness from group, much appreciated x

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Hi, I have no help for the pain, sorry. Just perhaps do not elevate your hand as in a sling as that will reduce the flow of blood even more. Are you on any medication? I was put on Sildenafil by my rheumy (after I requested it and mentioned that NICE now recomends it as the first line of treatment) and the ulcers dissapeared in a couple of weeks. Also, I was reviewed by Prof. Denton a few weeks ago and he said the sildenafil was wonderful.

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Hi Dunhorse you have my sympathies I've had exactly the same experience many times. I'm glad you are seeing your gp I'm usually given a two week course of flucloxacillin which is super powerful and makes you feel a bit rough but does the trick. We are advised not to take ibuprofen but as a one off maybe double up with paracetamol just while the pain is so severe. I have an iloprost infusion 2-3 times per year which helps so maybe suggest that? In terms of dressing the ulcer, I've found bactigras with a light melolin dressing then kept in place with breathable Mefix gives amazing relief.

Good luck with it and I do hope it begins to heal quickly. As you say it's hard to describe the pain to anyone that hasn't had them. One 'helpful' gp years ago told me not to get them in the first place. Most of us try anything we can to avoid them. Luckily my current gp and prof Denton's amazing team at the Royal Free have made an incredible difference to the management of my SSc .

Lindyanne

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Totally agree with above comments take some very strong pain killers until u get seen and maybe just take yourself down to your professor as I would say this is an emergency. You want this delt with immediately I don't know about your gp but my husbands never seems to have any idea what to do about his scleroderma.

He was in this same position about a year ago and the royal free cleaned his wound gave him some dressing to keep it clean some kind of liquid and bandage. Some kind of medication to help the infection sorry I can't remember what it was possibly (sidinifil)

Hopefully they will put u on the illoprost or something that will work just as good

Hang in there before you know it it will be healed just be very carful not to knock it anywhere and keep it covered best you can until you get seen

All the best

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Hi again I forgot to mention depending on where you live and which hospital you are under, the Royal Free has an ulcer clinic so if you call the scleroderma nurse helpline they'll either help you over the phone or see you as soon as they can

Lindyanne

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Hi there - you poor thing. The pain caused by ulcerated fingertips is truly awful. I've had Raynauds since 1984 and had many a sleepless night. I used to find some comfort elevating my arm and holding the affcted hand against the cold bedroom wall. Fortunately things have improved hugely since regukar Iloprost infusions. Are you under the Royal Free Hospital, their rheumy team is brilliant. You should call the R Free Scleroderma helpline. They will get back to you and give you highly profesional and caring advice re your fingers, and any other issues. As you say, scleroderma is horrible and people can't possibly have any idea how horrible unles they've got it. Thew Royal Free have helped me for well over 20 years, so do get in touch - and good luck xx

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P.S. Meant to say Sildenifil is a big help, as is Flucloxacillin...

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Hi there, I had the same thing, finger ulcerating going under the nail, in turn the nail stated going black. I had a prostacyclin (ibprost) (sorry about the spelling) infusion and that worked for me. I have a finger ulcer on the right hand and had an infusion last November and it worked. Unfortunately, one finger on my left hand started blistering so was booked in for another infusion which I had four days ago and thankfully, the skin has started to heal and the tenderness etc has almost gone, naturally the skin will take to heal but I'm on the mend. I don't know if this will help you but hope you find comfort in there is another avenue to explore.

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Hi Dunhorse, My sympathies - I have the same thing but on my thumb. I am under Prof Herrick at Salford Royal Hospital and they usually see me immediately if I have a problem as you need go on antibiotics straight away. You don't mention if you are under a specialist. Have you tried phoning the specialist raynauds and scleroderma nurse for your area? The raynauds and scleroderma association will have details of the specialist for your area. I don't know if they list the specialist nurses on their website - if not give them a ring. Good luck.

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My sympathies. I've had an ulcer under my index finger for the past 6 months, it's getting better but oh so slowly. Had the nail removed early on which helped with the extreme pain but my real saviour was an anaesthetic cream called Numit. It's available over the counter in Australia and is probably available under another name elsewhere. It's 2.5% Lignocaine and 2.5% Prilocaine. It takes a few minutes to numb the area and lasts for a few hours, it's quite cheap and easy to carry around and apply when needed. I know that I couldn't have coped without it. Good luck.

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Definitely go and see a specialist!! I doubt a general practitioner will really know enough about this extreme form of Raynaud's I'm afraid!

I am fairly new to this new companion of Scleroderma, but I have had my fair share of finger misery, including a digital ulcer. from my understanding this is a collapse of some tissue internally which goes necrotic and it takes a while until it will grow out and heal (obviously even longer than in healthy tissue with a good blood circulation). I had 2 bad index fingers, but had a shock cure which included Losartan, Sildenafil & Prozac, as all of those open the blood vessels. I know Iloprost infusion (which includes a hospital stay of about 5 days) would be the next step in case things don't improve. I believe the biggest pain results from nerves being damaged in the process. I had nerve pain so bad that I went to A&E as I didn't know what to do with myself. I did pressure the GP into prescribing me Gabapentin as all the normal pain killers don't really help with nerve pain. I believe it's actually meant as a ongoing cure and I'm not sure it would work on a sporadic basis, but somehow it makes me feel a little bit better just having it sit in my cupboard ;)

I am at the Royal Free and am really impressed with their Rheumatology team and the support they give (especially after about 1 year of puzzled looks and a disappointing shambles of "support and care" by the NHS!).

I am amazed how quickly you get an answer by phone or email. Try them and sort out your finger! Good luck! :)

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Hi Dunhorse123, I can well relate to having a Raynaud's ulcer under the fingernail. I had a horrible ulcer under the nail of my left index finger that took a while to heal. It was so painful that it throbbed during the night and woke me up. I cried a lot every night. The doctors were helpful, but asked me to go my rheumatologist regarding the ulcer. I persevered with the antibiotic and soaked my finger frequently in order to heal the infection. I also continue to take 500 mgs of (Twin Labs brand available at the Vitamin Shoppe) Niacin, 3 times daily. I take this 4 times daily when the weather is cold or I am in extremely cold AC. I am trying to avoid having this happen again by keeping pocket hand warmers and mittens in my purse in case of cold situations. It is of dire importance that you take care of yourself at all times. Work is stressful when you are fighting to keep your finger. Please rest and take responsible care of yourself.

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