Looking for people with the rare blood clot and leg and foot ulcer disease of Livedoid Vasculopathy. Mayo seems to be experienced at treating this disease so I thought I would find you here, I have it.
Interested in more discussions like this? Go to the Blood Cancers & Disorders group.
Are Livedoid Vasculopathy and Vasculitis the same? I was diagnosed with LV after 7 years of not knowing what was happening to me…skin grafts that didn't take, stripped veins and so many Drs. all saying it was not vascular…until one day 7/8yrs ago and after 2 years of serious ulceration and excruciating pain I begged to see a surgeon. Not sure why, but that surgeon is the one who said "I think you have been mis-diagnosed" and he did a live biopsy and sent it right here to the Mayo Clinic. It came back positive for LV and I was put on Trental immediately and within 6 months was back in remission. ( Both feet- one on the top of my foot and both ankles on the other) I have had several flare ups and currently in another very painful bout which has so far been 11 months and both feet again. I live in Canada and my Dr. says the only medication they can give me and the best one is Trental. I have been at this for over 15 years now and even knowing what is happening and what to expect I think the pain is wearing me down after 11 months. It is a lonely fight as it is rare so I am happy to have this connection and will check out the other you mentioned. Thank you so much angelasmom for helping so many out.
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@msmerry, Livedoid vasculopathy is sometimes also referred to as ‘livedo vasculitis’, ‘livedoid vasculitis’ and ‘livedo reticularis with summer ulceration’. I'd like to bring in @prairiesmoke @angelasmom @mlemieux @zenk @patientrea @cleverrover to see your post and possibly answer some of your questions. Mlemieux also lives in Canada and may have some insights about care in Canada.
You may also be interested in this discussion:
– Treatment options for Livedoid Vasculopathy (LV) https://connect.mayoclinic.org/discussion/i-am-looking-for-outcomes-in-the-use-of-blood-thinners-in/
Pain is wearing for sure. Do you have a concern about taking Trental? Is it still working for you?
Thank you so much Colleen, I really appreciate your reply. I have been in an outbreak again for 11 months now on one and I can't quite remember when the second started. I think perhaps 6 months is close. It would be so helpful hearing from someone else in Canada. So few Drs. know of this. I will have a look at the treatment options for sure. I have only seen one other Dr. in B.C. who comes into our Hosp. a few times a year who knew of this and he did say Trental was my best bet. That would have been almost two years and my outbreak at that time had just healed. And yes, if we didn't have this sometimes horrific pain it would be much easier to deal with. 🙂
I have a history of blood clots and I’m on warfarin. I have livedoid vasculitis and continue to have out breaks with ulcers on my ankles. I have used Urgotul which helps but when I have an issue have to use Drawtex. Is there anything to put on red, itchy skin to avoid another outbreak and how do you prevent them with warm weather in Florida? Cwhorton
I have it too. What kind of Dr do you see at Mayo? Dermatolgy or hematology?
Hi @cwhorton, welcome. Allow me to tag fellow members like @msmerry @ykh128 @yoan02 @ruthnz @zenk @patientrea @cleverrover, who have experience with livedoid vasculitis and can share their experiences with you and their tips for avoiding outbreaks and dealing with warm weather.
You also asked about what kind of doctor to see. Livedoid vasculopathy is complicated. At Mayo Clinic, experts work together from multiple departments to treat those with LV. You can read Cheryl's story here as one example:
– Surprise Diagnosis Spurs Learning Curve, Search for Help https://sharing.mayoclinic.org/2015/11/25/surprise-diagnosis-spurs-learning-curve-search-for-help/
CWhorton, have you consulted with a hemotologist and a dermatologist?
Yes currently have been seeing a dermatologist and hematologist not at Mayo and have an apt with a vascular surgeon. Thanks for tagging others with similar issues.
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
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.
Welcome, @merrycat. Fellow members @zenk @msmerry @cwhorton may have some ideas about dealing with pain and skin that feels like leather after the wound has healed.
I'm so glad you got appointments with dermatology and rheumatology and hematology at Mayo Clinic. Have you already been to Mayo? What treatments did you get? Have you told them about the residual pain and skin sensation of leather?
Merrycat, In all the time you have had these ulcer like sores on your leg have you had a punch biopsy near one of the sores to determine if you have Lividoid Vasculopathy ? If you do have LV ,not a Vasculitis , you need to see a vascular doctor to see if your small vessels, microvessels are blocked with fibrin . Then, a blood thinner is probably in order to get as much oxygen to the sores as possible. I take Xarelto 15 mg. daily . I would take 20 mg. if possible but I bruise too badly. There are many diseases that Mayo can rule out for you with blood tests that may contribute to LV. We continue to look for etiology for my LV but you may never know why you have it. I know that blood thinner works fairly well for me. Some do great with IVIG . Tell us what Mayo has to offer you. Thanks, Zenk
I did go the Mayo. Hematology prescribed Lovnox a twice daily shot of blood thinner. My feet and legs started to feel better. My next visit to Hematology at Mayo, my Doctor prescribed Eliquis twice daily. Vascular did a regeime of leg wraps and santyl on my wounds to be changed daily. Wounds have all healed. I am feeling so much better, back to work for 1/2 days. I contribute the faster healing to the blood thinners opening up the vessels in my feet.
I did get treatment. Rheumatology agreed with the treatment from my Rheumatologist.
Vascular treated my ulcers with wraps and daily application of Sanytl. I continued to see my wound center Doctor for weekly treatment. Hematology put me on twice daily shots of Lovenox, and transitioned me to Eliquis, a blood thinner. My ulcers have healed, my feet are starting to look like feet again, most of the pain is gone. My skin is finally healing also. I had about given up when I went to Mayo. I can't thank those Doctors enough.
Merrycat, So glad you got blood thinning treatment and wound care at Mayo. Your sharing of this info helps me confirm that I am getting the most up to date treatment also. I always hope that the reason for and then the treatment for the small vessel blockages will be found for us with LV . In the mean time what ever keeps us on our feet is welcomed. Thanks, Zenk
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