Livedoid vasculopathy

Hi @erina306,courage!!First of all please accept my apologies for the delay of my answer.Have your doctors tried other blood thinners,since the medications you used were of no help;Please let us know!

This is my third year suffering from horrible ulcers. Initially, after my physician finally acknowledging that I was in excruciating pain and seeing the ulcer ruptured, he referred me to a dermatologist. They took a biopsy as well as tons of bloodwork, in which all the “serious” probable causes were eliminated. At that time , the dermatologist felt I had drug induced vasculitis as I was on 2 potential culprits. Out of desperation, even though I’ve been diagnosed with PTSD, I weaned off the meds with help of my doctor. The ulcers subsided. Until the following spring. I noticed my flare ups and ulceration occurs in late spring and lasts until the end of fall. The cycle begins....I was then referred to a dermatologist who’s highly reputable who explained that my ulcers do not match drug induced Vasculitis, but instead it’s Livedoid Vascupathy.
He prescribed me Pentofloxin as well as aspirin daily. The pentofloxen made my heart beat so hard it felt like it would come through my chest as well as shaking. Pretty much like a panic attack times 1000. The aspirin caused thrush in my throat that I thought I kept getting strep throat from the pain and appearance of my throat. Long story longer , lol, I cannot take any type of oral medication due to such a high sensitivity level. My dermatologist decided to start giving me Kenolog injections monthly directly into each ulcer. First round I felt like I hit the jackpot. Then the flare ups went into overload. The pictures I attached are from yesterday. I’m beyond exhausted and feeling defeated. I’ve put on a lot of weight because I can’t even walk properly without shuffling my feet otherwise I feel like my skin will tear open. I use Cetaphil as a wash and I lotion my feet , not on or in the ulcers , with the same brand. I don’t know how much more I can take. It’s taken so much from my trying to function. I know I annoy the doctors with tons of questions but I’m tired of this trial and error. Is there any light at the end of this tunnel?

I soak my ulcers in Condy's Crystals = Potassium Permanganate. You can buy it from the chemist. A Tablespoon of it will last a long time. Only need less than a pinch. I dissolve it in a glass of hot water first, then add it to the water in whatever I'm soaking my feet in - at the moment a 4" deep tray, but have used a large rubbish bin when I had them up my legs. The colour you soak in should be like a strong rose wine. It turns your legs and nails brown. It's anti bacterial and more. I then clean out of the ulcers what I can, and put emla on them which numbs them enough after an hour, to debride them some more, to get all the slough off. Then I use acticoat flex 3, cut to the size of each ulcer, wet it and cover it with a porous sticking plaster so I can spray water on the acticoat through the dressing 3 or 4 times a day. Then every third day I repeat the process. Acticoat Flex 3 should be changed every three days. I have also used Iodosorb an iodine gel in a tube, covered with cuticerin and gauze, also using the emla to debride etc. Iodosorb needs to be changed when it loses colour as it has used its usefulness at that stage. My second round of leg ulcers was biopsied as Leukocytoclastic Vasculitis, which looks and acts just the same as the Lilvedoid Vasculopathy biopsied first time around. I was taking 300mg aspirin for the livedoid. now I take colchicerine for the Leuko. WHAT DO YOU OTHERS DO ???

Hello patientrea,
Farin stands for warfarin. I believe you have heard about warfarin (blood thinner) because it is often mentioned as the therapy of choice for LV.
Best regards,
Eva

Hello @eva75,can you please tell us which medication is Farin tablets?
Thank you so much.

Hello Zenk,
At the beginning I took Xarelto 20mg/day. During the first 6 months I took 20mg/day, than we reduced to 15mg/day, 10mg/day and 5mg/day (one year in total). Than I was free of tablets for a year and a half when it started again. I went back to Xarelto 20mg/day but it never worked again. Than the Dr tried some other alternatives such as Apixaban and Eliquis but nothing worked well. I was so bad with ulcers in October 2018 and than I went to the University hospital. My doctor decided to do more tests to see if there is any other underlying condition and did biopsy but again it was confirmed that it was just livedo vasculopathy. So he put me on injections Fraxiparine different dosages for 13 months, until December 2019. Than the Dr. decided to interrupt Fraxiparine and prescribed Farin tablets. He was expecting the INR values to be between 2 and 3 but I never reached INR value more than 1,8. That's why he told me to start Acenocumarol instead but still my INR values remained very low around 1,2 to 1,5. But still I am ulcer free and the Dr said this is a good indication for me, since I am ulcer free. In the last control I had last week, the Dr. reduced Acenocumarol in hallf tablet a day. I don't know how is this going to work because I am used to very high doses of anticoagulants and I fear the ulcers might come back!
Hope you will understand the chronology here, because I guess am not that good in explaining.
Thank you and best regards,
Eva

Eva, thanks so much for you answer on Xarelto. I will look into alternatives. What dose were you on of Xarelto?

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