Livedoid vasculopathy

Hello Zenk. Thanks for your interest!
I have been taking 20mg of Xarelto since 16 of March, 2018 but no results at all. That's why my doc decided I became resistant to it. But when I took Xarelto for the first time, they were of benefit after 3 months. So at the beginning I took 20mg, after two months reduced to 10mg, after a month reduced to 5mg and on the fourth month I took Xarelto of 5mg every second day. And than I stopped it. It was amazing! I was so happy it worked and I forgot I have LV for a year and a half. Thank it came back! Than Xarelto again for some 6 months and than remission for 9 months and than flare up again since March 2018, introduced Xarelto again but no results ever since. And did I have an extensive work up? Yes I did, during 2011-2013. But all the tests I did than, showed no underlying reason. This is why we are doing it all over again and this time even more extensively I guess, because I was taken 10 test tubes of blood 🙂 We'll see what it shows now! I'll get back with more news over the week. All the best, Eva.

Hi Eva, Sounds like your dermatologist is responding to your flare with good attention. Sounds like he wants to get the blood thinned as well as possible. I will be interested in knowing how well the Fraxaparin is helping . What dose of Xarelto were you taking before you stopped taking it? Is he consulting with a vascular doc? I am glad you went into hospital for a new look. Did you have an extensive workup when you first got LV ulcers? Did they look for underlying reasons for LV then? More questions than help I'm afraid, but maybe they will turn up something new. Zenk

Hello everyone,
I am new to this group but not new with LV diagnoses actually. I am battling with LV since 2011, with flare ups and short remission periods. Currently, I am in flare up phase and am in hospital for 4 days now. I have been taking Xarelto since 2014 and it helped at the beginning. Thanks to Xarelto, I managed to be in remission for 1,5 years but it came back again shortly after I stopped taking Xarelto. So my doctor introduced them again but this time I wasn’t so lucky because the ulcers continued to spread around my right leg and ankle. The dermatologist insisted I should undergo detailed examinations to see what kind of treatment I should continue because he believes that I became resistant to Xarelto. Currently he has put me to fraxiparin (generic: nadroparin-calcium) injections 2 daily and hopes they will be effective. We’ll see. I am still waiting for my blood test results if they show anything else, although the immunological tests I did over the last 7 year showed nothing else.
I am happy I found you guys 

To everyone on the LV group:
Have some of you tried apligraf on your ulcers? Did it work, were there any nasty reactions to it? I had it done about 7 years ago and it partially healed. The wound clinic in Fargo started repeating a second round of apligraf two and a half weeks ago and I am having what looks like a bad reaction to it. the ulcer has enlarged and the edges are swollen with many small blood clots that are bursting and bleeding into the apligraf area. I was told Wednesday when the graph was applied for the second time that the grey area at edge of ulcer was a pseudomonas bacteria infection. I was told to use a dilute vinegar wash on the area once a day. By Friday one of the blood blisters broke. I tried calling the wound clinic to have someone look at it, but they told me to come back for my next sceduled appointment (almost 2 weeks from Friday). Friday evening the bloody area was grey(from old blood, not bacteria) By Saturday more blood blisters had formed and Sunday morning another had burst. Now the whole ulcer has blood blisters around it and it hurts like the dickens. Asperin and Aleave don't cut the pain. I was diagnosed with LV years ago by tissue biopsy and am the only LV patient that the wound care people here have had to practice on. I also have factor 5 Leiden and a history of blood clots in legs going back over 40 years. Thanks for your help!

Hi Logansnana,

There are many references to blood thinner for LV going back to when Warfarin was the only option. Now the oral thinners make use much easier. Meds like Xarelto are prescribed by your doctor off label. A good study to show your doctor is 2016 article in the Lancet Hematology . You can google Study showing new hope for Lividoid vasculopathy using Rivroxaban. Hope this helps. Zenk

Hi Zenk, apparently your message did not come through. I only got "Hi Logansnana".

Hi Logansnana.

Hi Zenk, @Thank you for your comment. Can you recall literature you found this in?

Hi all with Lividoid vasculopathy, The most helpful medication stated in the literature is Xarelto 15 to 20 mg. per day. It is a blood thinner and is definitely worth a try. You need a prescription . Wish there were more studies on LV.

Zenk

Thank you. My hat is off to both you and my daughter. LV is definitely not for the faint of heart. My daughter, Angel, has had three of the ablations done at Kaiser Permanente in Oakland California over the course of the summer. The last one was just done three weeks ago. I am happy to report she is doing extremely well. I shared your post with her and she typed this reply for me to share."Stripping is how they used to do it. Essentially, the goal in both procedures is the same....
To stop blood from flowing through inefficient veins, and cause it to reroute to veins that work better . That being said, how do we keep these efficient veins from going bad? The answer is compression while upright and elevation when you're sitting.
Only time will tell if the laser ablation has proven to reduce the reoccurrence of the ulcers. The only thing I know for sure, is that compression helped me heal and at this point, the stockings give me hope that I'll be able to continue standing behind the styling chair ."
All the best to you msmerry