I am reading about so many on here who have had toe ulcers and/or amputations. I was diagnosed almost 3 years ago with limited scleroderma and secondary raynaud's. I have always been a very active person and quit running b/c of hip and back pain from the scleroderma and found that Zumba and other group fitness classes (I have been teaching group fitness for over 17 years) has helped replace the running. I recently even opened my own group fitness center. While I LOVE it, I have recently developed my first toe ulcer on my big toe. It is to the point now where it hurts to walk on it (it is on the bottom of my toe). I have taken a few days off from teaching and will have approximately 2 weeks off when we leave for vacation this week and am hoping with this time off that it will heal. Has anyone else had this and can you provide some insight or recommendation to me? I hate to be inactive but am deathly afraid of losing a limb :/ I feel very grateful that I do not have further issues as so many of you have and I thank God every day for taking care of me. But I am scared with this toe not healing.

Thank you!

21 Replies

  • Anybody describe to me what exactly an ulcer looks like??? I know this may sound thick but I know what a mouth uncer looks like.....but havent a clue about toe type????? T Y

  • We can get spots which become red and blue and hurt but do not have an open ulcer (break in the skin) or it can get to the point of the skin being broken. In either case if you have Raynaud's you don't have enough nourishing blood going to your extremities so it needs help to get better don't expect it to do it all by itself.

  • my toe ulcer started as a pin prick to start with then got bigger and wider and now its deep.its a hole a size of a 20pxx

  • Hi, ulcers are painful sores that can take months and if left to get bad years to heal. They are sores that blood flow can not get to to heal and are extremely painful. My ulcers can only be treated with iloprost infusions. I think that you need to keep that toe extremely warm and clean but I think you need to get to your treating scleroderma team so that they can assess it and give you the best treatment. In fact I would demand iloprost infusions if it was becoming painful. I have had limited sclero for 8 years I have iloprost every 4 months 24 hours a day anyway but if I get a sore I am stuck on the infusions 24 hours a day for 2 weeks. Don't let it get worst. The amputation issues come along if it is not treated, clean and kept warm and it reaches the bone. Sorry if I sound full on but I can stress enough on getting that looked at asap by your sclero doctors. I once read that every cut tiny or big to the hands or feet should be treated as an ulcer to heal and protect it in sclero cases

    Good Luck

  • mine is like yours .ive had iloprost infusions .my toe bone is now started as a pin prick now size of a seeing a bine and vascualr sprcialists urgently.on tramadol and morphine pain is unbearablexxx

  • I would just like to ask you how long did it take for you to heal from the toe infection?my mom is going throuh the same thing.

  • How much iloprost do u have? I had 97ml. Over 6hours a day in 3.4ml rate. Dr said when I was admitted into hospital years ago for 3 weeks I had 97ml at a lower rate but because I can tolerate it I go to the day treatment and go home then complete the treatment that way

  • Hey Tamie! I had an ulcer on my left big toe 2 years ago; right on the tip, under the nail; quite painful. My MD prescribed an antibiotic(I think it was ceflex), and I continuously applied neosporin to help it heal. I'm very active as well, and found it took about 2 weeks ro heal. To this day, that area is still quite sensitive to the cold and turns purple more readily.

    Hope yours heals quickly :)

  • Tamie, Take it as a rule that our extremities do not receive enough nourishing blood, so if you have an ulcer it needs to be helped with treatment and cannot be left by itself to heal. It's lovely to be active and continue with your life but get your ulcers treated if they come up, stiff upper lip has no place here. Do you get nifedipine? I have had it for years and in addition I have ILOPROST (it dialates all the blood vessels) at regular intervals, that prevents and treats ulcers. When infected I get antibiotics. Make sure you don't wear tight shoes or socks. Lead your life.

    All the best.

  • Thank you ALL for the information here. I must get to my GP. Two years ago I had a 'black' spot in the same place...big toe right foot...which the doc said she thought was frostbite! If it didnt clear it would have meant amputation I was told. However i now think its time for referal to specialist. I used to take nifedipine but it didnt seem to agree with me....I now have Valsartan 1x40mg per day prescribed...but it seems my body may have got used to it or maybe I need more.. I have had ME/CFS for many years so all probs get put down to many things are, of course. Does anyone know if low blood pressure is common with would make sense of course...I know one of the side effects of valsartan is OI....I have a very low reading (for me) but I have deliberately shed a lot of weight.over the last 15months. Thank you all again.

  • Well I get ulcers on my fingers and toes!! My raynauds is in my hands, knees, and feet, severe!! We thought I had restless leg syndrome. Well last time i went to podiatrist for toe ulcers I asked what treatment is their for finger ulcers since ive tried so much. Well to my Suprise he started me on Pletal 100mg at night and my ulcers are healing and my restless leg is gone. My primary said it is claudication. So I'm finally winning at something!! I wish you luck with everything the doctors prescribe!! It's always a nightmare!

  • make sure you apply a good lotion or foot cream daily. once they crack, it is a never ending battle! the cracks lead to ulcers, when it is very dry ( winter time ) i use a salve called Bag Balm. green tin can sold with the lotions at CVS / Walgreens. also Bath and Body works sells a foot balm that i put on , then put on my aloe socks and all is good!!!! if you get any crack/ulcer that does not clear up within a 7-10 days, get to you doctor so he/she can prescribe a steriod salve. good luck to all of us, we are our in it for the long haul.....

  • I also get ulcers hands toes ankles knees u have to b very careful my ulcers turned into gangreen very fast i suggest u see a podiatrist and buy what is called Light Relief it helps ur circulation and with the pain. i lost alot of toes i wish i had bought the light sooner. :) Ulcers can look green or brown if they open it usuallly has pus coming out. please let me know if u have any questions

  • I have a large ulcer on bottom of toe. it started April 2016 and it is at its worst and not healing Dec. 2016. I have a Light Relief and have used it a couple times. get relief but it doesn'the seem to last much past a day. How often and how mm any minutes do you use it? have you ever had the medication Pletal. or had Iloprost infusions into the toe? How many toes have you lost? I need to act quickly or I will lose this big toe. Today'so date is 12/26/16.

  • Hiya Ive had diffuse ssc and raynauds 15 years now (wehoo Im overjoyed !!), along with painful disabilitating ulcers and calcinosis throughout the years, as well as the gastro problems with taking continuous antibiotics to prevent their infection. I recently had an aha moment and discovered PawPaw lotion which along with the Bosentan I am almost ulcer free ! i can not tolerate Iloprost or any of the other vasodilator tablets so I am overjoyed with the results I am having at the moment ! One snag - it is only available in Australia so has to be ordered from the website which has so far been ok with delivery to the UK ! I also dress like an eskimo with Ugg boots and thinsulate gloves all year round ! Living the dream :)

  • hi ive got a toe ulcer under my left toe its the size of a 20p .i have had it now nearly a year.i suffer with scleroderma.and raynauds .been in hospital for 6 days having ilaprost by drip for 6 hours a day to open my veins.i cant wear a shoe.have to have it dressed twice a week i also have a bone infection in now being reffered to a bone and vascular clinic.they have taken photos.ive been told because its getting worse if it doesnt get better it might be amputated.i am on morphine and tramadol,.The pain is that bad its like im walking on glass.i will keep you updated how things progress.take carexxxx

  • I had mutch the same ulcers on my toes they amputated my leg below knee consultant said it's only thing they could never offered take my toes off

  • I had an ulcer on my toe andhad conflicting advice on how to treat it including my rheumatologist tetting me to soak my foot in a ho bath! I think that advice was to try and get heat in my foot for the raynauds but I have since learned ulcers should be keptdry. Then the vascular consultant decided she neeted to pick the top off to see what was underneath! Besides being extremely painful it really set back the heling process.

    It only started to heal when a nurse put an inodine dressing on it and gave me some o take home and change every few days and advised me to keep it dry. It was difficult to keep dry in the dhower but I managed by putting a plastic bag on my foot and water shoes which I used to use for white water rafting, Happy days. My ulcer is now fully healed.

  • Hello , . this post was 2 years ago, I hope you get this. can you describe how u did the iodine dressing. I see the value of the iodine but it is a liquid and u had to keep the area dry. would like to run this by my primary MD who so far has been more helpful than rheumatologist. want to try this, ulcer underr big toe and SO painful, can hardly walk. thank you so much.

  • As far as I can remember the iodine was built into the dressing so not actually putting liquid onto the ulcer. The dressing was changed every few days. I hope it works for you.

  • Thanks,Ilovedancing. I am going to inquire into that iodine dressing

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