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Livedoid vasculopathy

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

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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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Replies to "Hey everyone. I've been suffering from livedoid vasculopathy for almost a decade now. Got my first..."

@victorarrow, welcome. Are you now managing livedoid vasculopathy through diet modifications alone or do you take other precautions?

I was just reading a case study on this: "Remission of long-standing livedoid vasculopathy using a whole foods plant-based diet with symptoms recurrent on re-challenge with standard Western diet" https://casereports.bmj.com/content/14/2/e237895 - I was going to recommend it for my father. He had his first symptoms in 2013 and no relief since then despite trying the range of medicines and treatments. It looks like it takes a lot of commitment but when nothing else works it may be worth a try.

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?