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Livedoid vasculopathy

Blood Cancers & Disorders | Last Active: Sep 4 2:30pm | Replies (253)

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@msmerry

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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Replies to "Are Livedoid Vasculopathy and Vasculitis the same? I was diagnosed with LV after 7 years of..."

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?