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Good Morning, I also have this rare condition, it can be very painful at times, I have had it since 2020 just after lockdown, not sure why it happened but it did, it started with sores on my feet and lower legs, not bad to begin with but as time progressed it got worse. I went to my doctor and they then sent me to dermatology at Treliske Hospital Cornwall. The Doctors really had no idea what it was and the cause, they took swabs and blood tests and a couple of biopsies, but to no avail. I was given Dermovate cream and Dermol 500and 600 as they thought it was venous eczema but this irritated the skin. I was also told to use compression stockings which also caused more pain with the compression. I was given Prednisolone and antibiotics and the open areas were dressed at my surgery, this went on for weeks possible diagnosis was Cutaneous Vasculitis. I on two occasion ended up at A&E as I had breakouts over a weekend with weeping sores and very painful.
August 2021 the likely Diagnosis was Livedoid Vasculopathy and I was weaned off Prednisolone and put on Methotrexate, but coming off the Prednisolone my condition flared up and was put back up to 30 mg again, eventually I weaned my self off, it was a painful and uncomfortable experience.
12 months ago I was put on Methotrexate and now I am on nothing as I was still having breakouts and the medication was not working, so the Doctor and I both agreed to stop all medication. I was fine for a couple of weeks and the sores started again so back to my Doctor and I was given antibiotics for a 3 week period, there was some improvement but when I stopped using them it started to break out again. The Hospital has prescribed Rivaroxaban 20mg a blood thinner but I am reluctant to take it until all medication has left my body.
At present I am dressing my open wounds with Manuka honey which seems to help the healing process, long term I will have to wait and see.
Replies to "Good Morning, I also have this rare condition, it can be very painful at times, I..."
Hi Angel1234...and I am also sorry I did not see your post earlier. And I am also sorry you are having to deal with this like the rest of us. In the very beginning I was so hopeful that after they put me on the Pentoxifylline I would be good to go. I was for a few years and that was wonderful considering I had had two huge outbreaks. I just say huge because of the size of the wounds and the length of time trying to deal with it.
But as most of us know, there is only a remissive state for each of us and how long we get in unknown. I think every time I have gone into the remission I get so excited that I can walk and wear shoes I forget the intensity of the pain. I think maybe that is a good thing knowing now that the return can be around the corner so to speak.
I wish with all my heart they could get to the bottom of this. I saw a visiting Dermatologist to my small hospital and he thought it might be auto immune related but pretty much every test was good. I have a DVT and I understand this is part of this and he did as well.
As to any compression...NO! Too painful and how do you get those things on over large...baseball size open wounds anyway. No this is not venous to my understanding anyway. Usually there is no pain with a venous ulcer and that is where so much of the confusion came in. Also the Doppler tests were all clear with a solid pulse in my foot.
I have tried the Manuka honey and silver dressings but the pain increases and it is unbearable so we don't try those anymore. I am actually keeping the larger one very dry even changing it every day and it has helped. I am starting to see some pink skin as it fills in. ( It was very deep and long) The ridge around the wound is also becoming less prominent to the eye and to the touch.
I have only had to go on anti biotics I think 3-4 times in my 17 years so that is a plus and I have also done most of my own dressings. I am seeing wound care now...just once a week to have more eyes on things to monitor it. The nurses also act as a go-between for my Dr.
I do not think I could get the Rivaroxaban here in Canada but Pentoxifylline is similar as in a blood thinner. My question is can the body become immune to the medication and stop working? I wonder being as I have had two+ outbreaks since being on it. And is it a good idea to stop taking it periodically if that is the case.
Maybe someone here can help with it. Anyway, it is very nice to meet you...sorry you have LV and I look forward to hearing from you. I think it helps each of us if we can share with each other. At the very least we know we are not alone in this journey.
Merry C7
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Ange, I have had good results with Rivroxaban since 2010 .
When I do get a serious ulcer that stalls out and does not heal, I get a skin graft put over it to heal it and though it is major surgery I have an excellent plastic surgeon who oversees the ulcer untill healed completely. It seems you have little choice than blood thinner ,hope it works for you I take 15mg daily. Zenk