Livedoid vasculopathy

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?

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

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

I am hoping you will reply, even though this is an older post. I have a 20--year-old daughter with LV, who has been suffering nearly 7 years. We have tried nearly everything including an elimination diet (excluding eggs). I have been reading recently about uric acid, TMAO, etc. I'm wondering who you saw to test uric acid and recommending diet? Easter Medicine doc? We can rarely find a doctor to recommend changes to diet. We have tried gluten and dairy free with no success. Blood thinners didn't work . (Xarelto first and then Lovenox provided temporary relief only at high doses - and then it stopped working). How are you doing today?

I am hoping you will reply, even though this is an older post. I have a 20--year-old daughter with LV, who has been suffering nearly 7 years. We have tried nearly everything including an elimination diet (excluding eggs). I have been reading recently about uric acid, TMAO, etc. I'm wondering who you saw to test uric acid and recommending diet? Easter Medicine doc? We can rarely find a doctor to recommend changes to diet. We have tried gluten and dairy free with no success. Blood thinners didn't work . (Xarelto first and then Lovenox provided temporary relief only at high doses - and then it stopped working). How are you doing today?

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

@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!