Livedoid vasculopathy
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.
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Could you possibly ask your doctor to switch you to Xarelto? It is a blood thinner my husband takes for AFib.
Eileen
Thanks for the post. I will suggest my husband gets uric acid tested. Anecdotally, his reaction to high purine food (red meat, haddock for example) is very pronounced- pain at the site of ulcer under 1 hr after consumption; redness to periwound. An inflammation response that then peels. I can get it under control with betaderm 2 application in 24hours. But if one has large ulcers, wound management mantra is to consume protein to repair understandably. But patients need to be warned not to consume purine high protein sources if high uric acid concentrations help trip up platelet clotting in LV. It would make for a great Mayo Clinic Study for a diet challenge for LV sugfferes with high uric acid to determine how restrictive the diet needs to be. My understanding of purines is that even some plant based food (some of my go to's) are high - oatmeal, dried beans... I find it interesting you got help in India as curcumin seems to helpful in the cessation of the inflammation of epithelial cells problematic in gout and LV. Did you ayurvedic diet recommend specific levels of turmeric consumption?
I (38 y.o. M) was just diagnosed with LV after both of my feet ulcerated during a heat wave this summer. Previously the livedo had been misdiagnosed as morphea, but a biopsy of the tissue near an ulcer proved it was LV. No indications of autoimmune disease or monoclonal proteins... still waiting on full blood work to analyze for for possible causes/mechanisms, but preliminary results indicate hypercoagulability. I just started daily aspirin and a pentoxifylline regimen, and have gotten several pairs of knee-high compression socks, but it is still too soon to see results. It sounds like the any more targeted medications will need to be selected after hematology results come back.
I've been essentially immobile for 5 weeks (< 100 steps a day because OUCH!). My ulcers are healing slowly, but I don't want to develop any other health issues due to being so inactive. Does anyone have any tips for getting exercise?
In addition to concerns about physical wear and tear on my feet, I can tell that my issues are triggered by heat. Does that mean I need to avoid vigorous activity? Or just make sure I keep cool while exercising?
Does anybody have experience with swimming? Does chlorinated pool water help or hurt? Do I need to wait until the ulcers close completely?