Livedoid vasculopathy

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

No worries at all. Yes, they tried a few but I’d end up with adverse reactions. I’m so sensitive to meds that we are running out of options.

Pentofloxin and aspirin. Pentofloxin made my shake horribly feeling like my heart was about to pound through my chest and aspirin caused thrush in my throat. Adalat, made me incredibly dizzy, felt like my brain was on a wash cycle spin. Laid me out on my bathroom floor with no control of even sitting.
Kenolog injections, caused my ulcers to cave in more. Methotrexate and folic acid, mouth sores , amplified anxiety and panic attacks. Gas pain and gerd with pain in chest. Nausea , forceful urination.

Which medications did you try and what were the adverse reactions;

Did your doctor try heparins;

After the LV diagnosis I was on 300mg of aspirin a day, and the LV which started Jan 2019 finally cleared to nothing Apr 2020. Along the way I tried Xarelto and Trental (pentoxifylline) but my body didn't like them and I reverted to the aspirin both times. So I was clear Apr 2020-July 15 2020 when I woke with red spots from end of toes to top of legs. I saw the Derm a week later and biopsy diagnosis was Leukocytoclastic Vasculopathy and I changed from Aspirin to Colchcine twice a day. Some of the spots turned into ulcers just like the LV spots did. My treatment was the same. Soak lower legs for 20 mins in Potassium Permanganate (just like for LV), clean what I could from the ulcers, apply Emla, go to Hosp Clinic where the District Nurse debrided and redressed the ulcers.. 4th Oct I developed cellulitis and was in hospital 5 days and those Dr's reduced the Colchicine to once a day. Treatment of the ulcers has been the same as for LV. I was finally signed off from the Hosp District Nurse Clinic this week. I still have dried ulcers along the outside edges of my feet and am wearing cotton stocking over them till the dried skin falls off. Still can't really wear shoes 🙁 On the right leg which had the cellulitis I wear compression stockings during the day and take off at least an hour before going to bed. I sleep with the end of the bed raised about 20cm. So far so good. On Monday I'm going to a Homeopath bec my immune system is now attacking my kidneys and I just don't want to go any further down this auto immune road. Five auto immune crap things going on at 68 is enough. I don't want to spend the rest of my life living like this with the possibility of more developing.

No worries at all. Yes, they tried a few but I’d end up with adverse reactions. I’m so sensitive to meds that we are running out of options.