Livedoid vasculopathy

She is currently being seen by rheumatology and hematology at University of Iowa Hospitals. In the past, she has seen a dermatologist (initially and some beyond that) and she has seen a couple of rheumatologists and Functional Medicine at Cleveland Clinic, along with several Integrative Doctors along the way.

@victorarrow
Do you take any medications or supplements to keep you in remission, such as omega-3 or baby aspirin? Thank you so much for your replies.

She is currently being seen by rheumatology and hematology at University of Iowa Hospitals. In the past, she has seen a dermatologist (initially and some beyond that) and she has seen a couple of rheumatologists and Functional Medicine at Cleveland Clinic, along with several Integrative Doctors along the way.

Hi @kawalker
Sorry for the late response, I didn't get notifications about messages here until someone gave me an @ recently.
I hope this message reaches you.
I totally agree with your post about the Mayo clinic needing to have more focused studies on LV to help support and provide us with various options to battle the condition.
For me, there was not a major change in diet, since I'm Indian, and our cuisine can be heavily vegetarian by default. We do use Curcumin and Turmeric in our dishes which are known to be anti-inflammatory, so I'd highly suggest using those in your husband's diet too.

I know for me, once I got it under control, I could have the things I used to eat in moderation without any flair up occuring. I've not had another attack of ulcers since 2019.
My diet did not have any meat in it for at least 9 months. Dairy was fine, yogurt especially. I ended up eating a lot of fruit, veggies and curries. I will say, that did help with weight reduction, which I think also helps keep this condition under control. Since then, I've made a huge effort to get, and stay, fit. The better the blood circulation I have, the less likely this condition is to re-occur (in my mind). I found that it was very cyclical. Attack occurs, I lose lack of motivation and it hurts to work out, I get worried that it'll happen if I do anything too strenuous, and I don't exercise. If the diet helps and it stays away for a few months, I highly suggest trying to get 10k steps in a day if you're husband is up for it to help circulation.

Not sure why it wasn’t uploaded, but here are my feet today

Welcome, @iamom It doesn’t appear that @victorarrow has been active since originally posting their comment in 2021. But they may still get a notification in their email if they are still signed into the forum.

However, there are other members here who have LV. So hopefully they can share their experiences for what has helped them.

I’m so sorry to hear about your daughter and her 7 years of trying to work through this! As a mother this has to leave you feeling so helpless and frustrated for her.

Is she being seen at a larger teaching/research hospital such as a university?

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?

@victorarrow Thank you so much for your very helpful reply to @iamom for her daughter’s battle with LV. What a painful and disruptive disease. It’s wonderful you’ve been relieved of your symptoms for 5 years. Wishing you continued success! Thank you again for sharing your experience and what worked for you!

Hi, imamom
I’m so sorry to hear about your daughter. It’s a devastating situation to be in, especially at her age. To answer a couple of the questions and to give some more insight, yes, it is an eastern medicine doctor that told me to test for uric acid. I had seen maybe a dozen different doctors around the US before and the only thing they could suggest was different types of oral or injection medicine. I am Indian, and the last resort we really had was to go to a naturopathic clinic in India. One of the doctors there had seen something like this before and recognized that you were acid may have been the cause so decided to test for it. I may be getting the numbers wrong but I think the normal level is 7 and mine was closer to 14. I don’t eat red meat because of my culture, but I did eat a lot of poultry, especially fried and not so healthy foods. I went on an almost purely natural diet for about six months before starting to introduce more lenient foods into my diet again. and by that I mean, vegetarian with a focus in a reduction in purines. For me, it was also important to cut out foods that had high fructose corn syrup, and other preservatives similar to that because those increased my uric acid levels. It’s been five years since the last time I have had an attack and I am able to do everything normally as of today.
I’ve attached 2 photos. One when it was at its worst, and another from just now

Hi, imamom
I’m so sorry to hear about your daughter. It’s a devastating situation to be in, especially at her age. To answer a couple of the questions and to give some more insight, yes, it is an eastern medicine doctor that told me to test for uric acid. I had seen maybe a dozen different doctors around the US before and the only thing they could suggest was different types of oral or injection medicine. I am Indian, and the last resort we really had was to go to a naturopathic clinic in India. One of the doctors there had seen something like this before and recognized that you were acid may have been the cause so decided to test for it. I may be getting the numbers wrong but I think the normal level is 7 and mine was closer to 14. I don’t eat red meat because of my culture, but I did eat a lot of poultry, especially fried and not so healthy foods. I went on an almost purely natural diet for about six months before starting to introduce more lenient foods into my diet again. and by that I mean, vegetarian with a focus in a reduction in purines. For me, it was also important to cut out foods that had high fructose corn syrup, and other preservatives similar to that because those increased my uric acid levels. It’s been five years since the last time I have had an attack and I am able to do everything normally as of today.
I’ve attached 2 photos. One when it was at its worst, and another from just now