Livedoid vasculopathy

Posted by angelasmom @angelasmom, Aug 3, 2011

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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@plantskidsdogs

I'm on Eliquis also. It's causing SEVERE muscle spasms everywhere 2-4 times every hour, all day and night. I've never had an issue with any medication but it has to be the Eliquis. It was a very sudden onset. Within a week of being put on it I had the most bizarre onset of neuropathy (numbness) in my toes. I'm young (59 y/o) and besides my episode of Atrial Fib (now resolved for 3.5 months) I've never had any health issues. They've ruled out other causes. I'm also having twitching of muscles and a feeling of general weakness. This is very remarkable because I could formerly unload our truck with a pallet of 50# horse feed bags and stack them easily. Now I feel weak. But the muscle spasms are really the worst of it. They are all over my body in weird muscles but have even had them in my hamstrings and it's brought me to the floor screaming. Your muscle spasms may be from the Eliquis?

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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

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@victorarrow

Hey everyone. I've been suffering from livedoid vasculopathy for almost a decade now. Got my first attack/diagnosed when I was 13, and it's been on going ever since. At first it started out with painful ulcers lasting about 4-5 weeks, but as the years went on, the attacks became more frequent and more severe. Eventually, in 2019 I had the worst attack yet, pretty much needing crutches to walk for about 6 months, with blinding pain at times. After this attack was over, and I exhausted dozens of different 'experts' and doctors, I've tried to go a more natural path. I went to India for about 3 weeks, to a small center specializing in ayurvedic treatments. I didn't think anything of it, because how could it work if medical experts couldn't do anything about it? When I went, they knew how to treat it almost immediately. They made me get a uric acid test, something no doctor has ever ask before. when seeing my levels were over double than the normal amount, they recommended a diet tailored around getting that level to reduce. I've been on it for about 1.5 years now, and have not even felt a tingle of an attack on my feet so far. I get a uric acid test every 6-8 weeks to make sure my levels are consistent. I used to eat a ton of meat, which is the biggest reason my levels have been so high. I ate chicken pretty much daily. Now i've reduced it to about once a week and I thought i'd share my story with you guys. I know that this is not a proven method. I know that this will not work for everyone. But it worked for me. And knowing just how much pain this condition can bring physically, mentally and emotionally, I want to let you all know. If this can help even one person, I think it's worth it. I used to be on all the same medication that has been mentioned before as well, pentoxifylline, aspirin etc... but even that has reduce to 0. Please let me know if I can help in any other way

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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?

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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?

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