Posted 12 January 2011 - 02:22 AM
A couple of years ago I had ulcers on my fingers all winter which led to bloodwork which eventually led to a diagnosis originally of CREST, and then changed later to Primary Sjogren's, because the ulcers went away and haven't yet been back. And my ANA which had originally been nucleolar (1:640) a couple of times, was speckled (1:80) once. Although since then another blood test has come up 1:320 and nucleolar again.
However, I still get constant splitting at my fingertips. And one of them, after getting a couple of splits in the same spot, has developed pits where the splits used to be and the skin is hard there, and seems to be thicker (an isolated spot).
I don't get the colour changes with Raynaud's, but my fingers get cold very easily, and winter weather hurts if I don't have a really good pair of gloves or mittens on (and even then, they can still be cold sometimes).
Anybody get a lot of splits rather than the ulcers? I've tried sleeping with vaseline or vitamin E on my hands under gloves, but the gloves make it hard for me to sleep (too uncomfortable). Any other suggestions?
Posted 12 January 2011 - 02:46 AM
Here's a warm hug, to warm you up and make you feel better.
Please keep in mind that I have no medical training at all and that I would be a great danger to society at large if I did! Luckily, as I understand it (and I may be wrong, I often am!) there is a big difference between skin splits, which are very common, and digital ulcers so I'm going to assume you and your doctors know the difference and that what you really have are regular ordinary skin splits.
If you've already tried some remedies that haven't worked, I'd suggest you see a dermatologist for an optimum treatment and prevention program. After all, you don't want to just clear up the ones you have but prevent others from occurring. It might turn out to be something simple, like adding a humidifier at home and using plastic gloves every time you are cleaning. Or perhaps more complicated than that.
I've heard that vaseline should not be used on any open cuts (or in the nose for that matter); it is a by-product of oil processing. You might find it easier to tolerate cream/gloves by wearing surgical gloves (they are cheap, but a lot better than other gloves and you can get them at most drugstores) during the daytime, perhaps while you're eating, reading a book, or taking a bath.
I'm hopeful that with good medical advice and concerted attention, you can put a stop to the skin splits and keep them at bay. Also you can study up on tips about how to prevent attacks of Raynaud's, which includes wearing gloves (or keeping hands in pockets) all the time. Please don't skip out on this, you can get Raynaud's even with Sjogren's and it is easier to prevent circulation problems from worsening than it is to reverse them once they have gotten a good foothold!
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099
The most important thing in the world to know about scleroderma is sclero.org.
Posted 12 January 2011 - 03:15 AM
I really sympathise; cuts and splits on the fingers can be excruciating!
I suffer with Raynaud's, but thankfully have never had digital ulcers (mercifully!!) Funnily enough, although the weather in the UK has been exceptionally cold this winter, I have suffered less with finger splits than previously. This could be due in part to the fact that I don't have my horse any more and so my hands are not constantly in and out of cold water and exposed to the elements as much as they used to be.
I've found in the past that putting udder cream or a soothing antiseptic cream on my hands has helped to keep the skin more supple and therefore less likely to split. I used to use it on the horses' heels to stop the skin splitting there too!!
ISN Assistant Webmaster
ISN Sclero Forums Manager
ISN News Manager
ISN Hotline Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)
Posted 12 January 2011 - 06:32 AM
My wife had bad digital ulcers from scleroderma; she would put nitro paste around the edges, not directly on the broken area. She also used to use hot packs inside her gloves; you get them from camping stores. She had electric gloves but they were very bulky and hard to get on and off. She also had a hot wax tub that she placed her hands in which would help with the contractures and loosen the skin up.
Viagra and meds for pulmonary hypertension helped to some degree in improving them. She has none since her stemcell transplant two years ago.
I used to live in England the damp weather is Brutal.
All the best
Posted 14 January 2011 - 11:22 AM
I get one special split on my fingertip that keeps coming back and opens every time starting from the corner of my nail, it definitely hurts. I put a blob of antibiotic cream on mine with a bandaid during the day and at night before bed again. It clears up in a couple of days usually with that. Hopefully you'll find another method that works for you from someone here.
I'm also a steady customer of Raynaud's.
Posted 15 January 2011 - 02:27 AM
Shelley - These are definitely just splits - I had digital ulcers a couple of years ago and they were definitely different. I much prefer the splits over the ulcers, that's for sure, although they are getting pretty tiresome!
Snowbird - I may try the antibiotic cream - I'm currently trying a "crack care" liquid, and it does seem to stop them from opening up really badly, but maybe the antibiotic cream will help them go away faster.
Craig - I wanted to look into hot wax tubs, also for my sore and stiff finger joints. I'll see if I can find anything good.
Joelf - I've heard of the udder cream. My hands get so terribly dry, I should look into that as well.
Thanks again! Some great ideas to try!
Posted 15 January 2011 - 08:17 AM
I can't say it totally fixed the problem but it did minimize it a great deal.
This post made me notice that I haven't had to do this at all this year for the first time in years- hmmmm.........