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angelasmom (@angelasmom)

Livedoid vasculopathy

Blood Cancers & Disorders | Last Active: 4 days ago | Replies (227)

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My name is Alejandro, im 35 years old and was diagnosed 1 year ago with livedoid vasculopathy. I have atrophie blanche and livedo reticularis and I get very painful ulcers on my ankles. If anyone knows more about how to get good treatment please let me know

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Replies to "My name is Alejandro, im 35 years old and was diagnosed 1 year ago with livedoid..."

Good morning Alejandro I am a 54 yo mom. I worked many years as a rehab therapist before LV forced me to retire as disabled. /this gives me some background in health that is helpful. I have atrophie blanche which is mostly helpful to help MDs diagnose us. I started to have ulcers 5 yrs ago .Diagnosed 3 yrs ago. Most importantly I’ve been in remission for 19 months. That is I have no ulcers. I have slight foot swelling and slight neuropathy.. As you may know the disease is not curable but we have periods of attacks or flares and if we are lucky and find what treatment helps us we have remissions too.
My theory is that L V is an auto-immune disease of the blood. The autobodies in our blood responsible for making scars that stop our cuts bleeding and kill germs malfunction and start making scar plugs in the middle of our tiny leg blood vessels for no good reason. This cuts off blood to the skin and starts ulcer.s. I am sorry if I am repeating info already familiar to you. Ignorance about LV amongst sufferers and doctors is our biggest obstacle.
Where are you being treated ? Do you have a dermatologist? I am keeping and reporting a list of treatment centers recommended by LVers for every part of the country and hopefully the world..
I take anti platelet drug dipyridamole and trental to increase circulation to extremities, I wear strong compression stockings daily because swelling triggers those clots and slows healing. Others take much stronger blood thinners hyperbaric oxygen and Intravenous immunoglobulin therapy
Really what you need to do is go to Imspire.com skin conditions group. Look up every post on lividoid vasculitis first then every post on livedoid vasculopathy. the on line community of Lvers has been our most powerful help against the disease. See you there Angelasmom .

Hi angelasmom,thanks for sharing with me what you’ve gone through I know it’s not easy to live with LV. I’ve had LV about 6 years but was just diagnosed a year ago. Back in December 2011 I was hospitalized because I had a mega flare up! It was so bad that I got gangrene I had 3 really big ulcers the size of baseballs and I could not walk because of the pain and swelling.Thank God for a Dr. Named Dr. Marc Hare, he works at the center for wound healing and hyperbaric medicine,he went to see me at the hospital. I go to see him once a week for the ulcers and he diagnosed the LV, I also see a hematologist every 2 weeks to check my inr as I am on caumadin. In the beginning I was seeing a vein doctor and had some surgery done but as you said this disease has no cute yet, only the symptoms are delt with not the problem.i pray one day we may be cured of this disease, at the moment I am also in remission, oh and I also had skin grafts put on my ankles.

About 3 years ago I had what I thought was a bug bite on my shin, I couldn't get it to heal, finally went to the wound center. I developed other ulcers. After a few months they healed. I faithfully wore my compression socks. About a year and a heaf ago I developed more sores, got a bacterial infection in one, was one antibiotics and finally 3 weeks of antibiotics by iv for 3 weeks. Large sore finally healed 5 months later. In December my wound Dr and my rheumatologist gave me a Rituxin infusion for my RA. I developed a severe reaction to it, hives and itching all over my body. It helped my RA, but caused other problems. My drs referred me to Mayo Dermatology and vascular, and she set up appts with Rheum Hemotology.
Finally got treatment but it still is painful and my skin feels like leather.

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