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Hi! I'm not sure how this works so forgive me if I post in the wrong the place. Over a year and half ago my right ankle was red, hot and swollen. I thought it was due to some ongoing orthopedic issues and went to see a sports medicine doc. Long story short, I have seen two sports med docs, two orthopedic surgeons, two rheumotologists, two dermatologists, a cardiologist, had two MRI's, several ultrasounds, and several biopsies. After several ulcers broke open (and made life unbearable), I begged for prednisone (the only thing that had worked to that point). I took that for several months (the ulcers healed). I weaned myself off and had one more biopsy that came back with a diagnosis of LV. The doctor started me on the generic of Trental (can't remember the real name). Although, i haven't had any ulcers in several months, the swelling and redness are still spreading. I feel like there's more going on than just the LV. How do I find a doctor who has treated this before? Any chance my foot will ever look normal again? Any chance I will be able to be active again?
Any help is appreciated!
Susan
Replies to "Hi! I'm not sure how this works so forgive me if I post in the wrong..."
Hi @susank2020, I add my welcome to @ruthnz's response. So glad you were able to join the conversation. I would like to invite @zenk and @curtismiller back to the discussion. I am glad to hear that the ulcers have healed, but it must be difficult to still struggle with the swelling and redness that are still spreading.
I am not sure where you are located, Susan, but Mayo does have a physician in Arizona that specializes in livedoid vasculitis.
https://www.mayoclinic.org/biographies/pittelkow-mark-r-m-d/bio-20053914
Does it interfere with your livelihood during the day? What have your local physicians recommended for the swelling, if anything?
Hello Susan,
I've been struggling with LV for over 10 years and I did biopsy that also confirmed LV only. So if you did the biopsy and that confirmed your LV you should't worry that there might be something else. Swelling and redness are also part of the LV. This condition is treated by dermatologists only and the only therapy that works out so far is anticoagulants or blood thinners and the best one is Xarelto. I was on Xarelto tabs for over 3 years and I was ulcer free from 2012 to 2015 but than I became resistant to it. Than I had a bad flare up for over 3 years (during which period I was on various medicine like Colhicine, Trental, Prednisolone, Nifedipine etc, but nothing worked for me) and since 2018 till now I take Acenocumarol that still works fine for me. I am ulcer free for over a year now.
So, I think you should consult a good dermatologist about the LV and anticoagulants. Also, there are some good and friendly groups on Facebook with people that deal with this condition, where you can also find very good advises and learn from their experiences.
Best regards,
Eva
Hi!Please be optimistic!What is the diagnosis given to you by the doctor who started you on Trental generic?
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I'm in New Zealand and so a very different health care situation. Trental aka oxpentifylline did not work for me, I got more ulcers and I reverted to 300mg aspirin only. I hope someone in US can help you. My LCV took 16 months to heal and I had 3 mths free of trouble still taking the aspirin , then wham 15 July overnight I got spots from end of toe to top of leg. Diag a week later as Leukocytoclastic Vaculitis, the spots eventually went and some on my feet turned in ulcers. 23 July I stopped the aspirin and I am now on Cochicerine, so far so good.