Livedoid vasculopathy

My husband was recently diagnosed with LV and has a very painful large sore on his ankle. No docs in our area have ever seen this before. Is there any doctor at Mayo or elsewhere that have treated this disease? What type of doctor would we look for?
Thank you for any info.

Hello @timsleg and welcome to Mayo Clinic Connect. LV is classified as an uncommon disorder and one that has been seen and treated at Mayo Clinic, yes. I thought you may find this patient story helpful.

- Surprise Diagnosis Spurs Learning Curve, Search for Help:
https://sharing.mayoclinic.org/2015/11/25/surprise-diagnosis-spurs-learning-curve-search-for-help/

If interested, you may use this link to request an appointment to be seen:
http://mayocl.in/1mtmR63

Will you please come back and provide an update as to your decision and next steps for your husband?

We understand that Dr. Shields at Mayo in Minnesota treats LV. Are there physicians at Mayo in Florida that also work with LV patients?

The best way to find out would be to reach out with an appointment request. If interested, you may use this link: http://mayocl.in/1mtmR63

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.

I wanted to edit my comment here but couldn't find where I could do that so I am replying to my own post. I thought of something that might be of interest to anyone doing their own wound care at home. I found some Hydrocolloid Gel Bandages that my wounds seem to like. A bit expensive but they can be worn for a few days depending on your wounds and any weeping. If I am allowed to say where I got them, I found these on Amazon, and they are made by All-Health, Advanced Fast-Healing.

@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?