Livedoid vasculopathy

I don't know if anyone is monitoring or not. I asked a question over 6 months ago and got no reply. I have had an LV ulcer on my ankle for 25 years. It has not healed in the last 4-5 years, and the pain, which seems to hit without warning, is like boiling water being poured on the ulcer. I take aspirin in the morning and Alleve at bedtime for pain. It dulls pain somewhat. When my ankle hurts I put my feet up and try to concentrate on something else (TV, games, book, etc) until the pain goes away. If I wake up and the pain starts I try to lie so that nothing touches the ulcer, and relax my muscles. I can not stand in one place for very long, as this aggravates the ulcer, and I can not walk or work moving around for more than a half hour at a time or I pay for it later in the day. It is depressing at times. Hang in there, you are not alone!

Hi,you're not alone!!Are you taking any medications?

Hi @robingayle and @prairiesmoke thank you for sharing your stories. Connect is a place where you can always vent and share your stories with people like you.

I want to thank @patientrea for responding to your post and I also wanted to tag @zenk as they may be able to offer you support.

To repeat @patientrea's questions, what medications are you on right now?

Hi Sheila and all, Are you taking any blood thinner? Xarelto or other blood thinners are the best way to treat the ulcer because it will allow for more oxygenated blood to get to the wounds. You probably need somebody in wound care to talk with, and maybe get more pain control. Zenk

I am taking 2 regular aspirin a day for blood thinning. I have been on warfarin in the past for blood clots in legs and lung. I have been leery of trying stronger pain meds. I am in a test study now with a new grafting material made from placental tissue. It has worked somewhat, but it is a slow process. I talked to my regular Dr. about Xarelto, but she seemed to think I was ok with aspirin as a blood thinner. I also have factor V Leiden, which aggravates the blood clotting. Sheila

I take 2 regular aspirin a day for clotting control, and Aleve for pain control in the evening.

Hi Shiela, Just wondering if you would benefit from a more potent blood thinner. Aspirin is not enough to get oxygen to the wound. Maybe just a trial on something like Xarelto would be a thought. Also, some wound care studies have suggested the an eye drop called Timolol Maleate , your doctor would know what it is, placed on the ulcer a few times a day has been shown to improve blood flow to the wound. The drops are a prescription but are not expensive.
Wishing you better treatment, Zenk

Thanks for the info on the eye drops! I will see about the timolol Maleate. If I try it I will have to test it on my skin first to see if I have a reaction to it. I have a number of allergies which complicates things.

Hi Steph! I have not been diagnosed with LV but I have been struggling with symptoms identical to what has been described in this chain for the last 10 years. I am 29 years old. I got a blood clot and was diagnosed with activated protein C resistance at the age of 19. At the age of 23, a previously very painful chronic ulcer on my right ankle went through a phase of being extremely itchy. In fact, the itchiness spread across my whole leg and got so bad I struggled to sleep. This was treated successfully with cortisone cream and by wearing a compression sock. I was treated in Switzerland. It took several months to heal but the good news was that the scar on my ankle got less painful than before the itchiness. I don’t know why. With regards to birth control, I used a copper IUD for five years since I cannot use hormones. Hoping that you will get rid of the itchiness soon, if you haven’t already!

My Dermo yesterday changed my meds from 300 mg Aspirin a day to Xarelto. I hope it makes a difference. I am also doing a full AIP Auto Immune Protocol food regime to try and knock this thing on the head