Livedoid vasculopathy

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

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

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

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

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

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!

Is anyone still monitoring this group? I have LV and I am in desperate condition. Mostly, it is the chronic, excruciating pain for the last 5 years that has me profoundly depressed, exhausted and feeling as if the quality of my life has reached the point of diminishing return. I get flares 4 to 7 times per day that feel like a torch is being held to my feet. I have had the same open ulcers for 5 years. one on the top of each foot. I had 2 other ulcers that took 3 years to heal. I feel as if I am being tortured. Thank you for letting me vent.

Hi ayy, tThe preferred treatment for Lividoid Vasculopathy is Xarelto which is a blood thinner. You must be sure that you indeed have LV. The diagnosis is confirmed with a punch biopsie near an LV ulcer. If your dermatologist did the biopsie, you should perhaps trial on Xarelto under your doctors care.Lividoid vasculopathyt is a vascular disease of the very small vessels . That is wehy blood thinning works well for many of us. Zenk

Hey everyone! I first want to say that who ever is dealing with this, I am sorry and I am feeling the same frustration.
I started showing symptoms of this about 3 years ago or more. I first remember being diagnosed as a rash of some sort from shaving. Then I was very sure it wasn't so my family doctor sent me to a dermatologist specialist. I was with her for 2 years and she tried creams, and everything. She tried a variety of medicines on me including methotrexate, and the last one was pentoxifylline. I tried all of these but nothing has really helped. It is on both lower legs/ankles and now it is spreading to my feet on the top sides close to the ankle bone.She had sent me to a cancer center that is in my town in Iowa and the blood doctor was very confused as to why my dermatologist sent me there. She ran tests and she told me I don't have cancer so she was confused as to why I was there. I gave up for the last 3 months. I do not know what to do anymore. I am 23 years old and I have had thyroid problems in my past, and I do have Grave's Disease, so I do not know if that would make a difference. I feel like my doctors sort of gave up because they did not know what else to do with treatment for me. Will you please get back to me... someone?