Scleroderma & Raynaud's UK (SRUK)
6,790 members3,213 posts

Vascular problem with foot

I have had Raynaud's and scleroderma since the 1980s I am now 76 I have all the usual problems Heart, lungs, P hypertension, Gut, Barratts Oesophagus so unable to absorb iron. i jog along with lots of medication then had a new problem. Exactly one year ago i had an excruciating pain in my right big toe . this happened in the middle of the night. Following I week of out patient treatment and two weeks inpatient iv illoprost in very large doses continuously this had done no good. My toe was coming necrotic and was spreading under my foot. Because of my very poor circulation the Vascular surgeon was very reluctant to remove my toe. I was having to get to my surgery 3 times a week to have it dressed, very awkward as surgery 5 miles away and me no longer able to drive. I did not have surgery until December 21st and the small wound that was left has not yet begun to heal, I see a podiatrist at a local hospital now but no progress yet, I wonder if any one else has had this problem and knows of anything to aid healing.

Sorry for such a long post but nice to get it off my chest. I also have to get my bloods taken for INR as my Warfarin levels are not that stable


5 Replies

Sorry to hear you are going through this. I had similar issues started in my toes slowly went up my legs my toes starting dying as well. My Dr did a tarsal release it helped. I can walk again. I have systemic scleroderma with CREST, lupus, asthma and neuropathy. Past 3 years were bad thought it was the end for. He did that surgery and I can walk and since I can walk I'm more active and being more active reduces inflammation it's been a win win. I know this condition will be my demise but I'm making the best of it while I can. Best of luck to you and much love. 💜🙏🏻😊


Good morning Pat, so sorry to hear you are having such a hard time getting the wound to heal. I have had Crest for the last twenty years. When I last had an abdominal operation relating to my scleroderma I had an incision in my stomach that wouldn't heal and the nurses treated it with manuka honey which helped it heal. I now have lots of calcinosis which need treating regularly and I am applying Allitech which is garlic based and this is really helping me. Also I have just got a MagnTech machine from the same company on loan for a month which again is meant to be very good for healing. The company is called Dulwich Health and their number is 020. 8670 5883 is you feel to go down that route. I am sending you lots of healing thoughts and hope you get better soon. With love xxxx

1 like

Hello every one Thanks for your recommendations I have considered Manuka honey but the professionals don,t recommend it. I also forgot to say I have mouth ulcers all the time and have 4 digital ulcers which also take many months to heal We must just keep supporting each other

Best wishes Pat


Hi Pat, I'm sorry I can't help you with the healing problems but I just can't believe you had to travel to your surgery 3 times a week when you are obviously in poor health and 76 years of age. Surely your GP should refer you to the community nursing team, they could visit you at home anytime you needed bloods taken or dressings done. I understand the pressures our health services are under but you are a genuine deserving case!


My surgery did try but the district nurses only came for one week after having my toe and joint off. but could not provide further home dressings. I hope I can drive again soon despite my unhealed wound then I will not have to keep asking for lifts.


You may also like...