Mayo Clinic Connect
Looking for people with the rare blood clot and leg and foot ulcer disease of Livedoid Vasculopathy. Mayo seems to be experienced at treating this disease so I thought I would find you here, I have it.
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Funny.. my derm doctor sys its vasculopothy, but my primary says vasculitis, so who knows.
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My GP did the same thing and so I thought it was one and the same. I was just lucky enough to have a surgeon who did the biopsy to find out it was indeed LV. I am in Canada and very little to go on here as well. I was put on Pentoxaphylinne (sp?) and did get relief but now it is back. 🙁
Hello …I am writing on behalf of my 44 year old daughter who has been battling L V with atrophie blanche for several years. It is getting progressively worse. She is trying to continue working at her business (she runs her own hair salon) but it is getting harder and harder. I am trying to help out by researching new avenues. My heart is breaking not only for my daughter but for all of you who are suffering so with with this enigmatic disease. You are all in my prayers for continued strength and courage. What I am puzzled about is that my daughter's vascular physician (Kaiser in California) is now insisting that she undergo a procedure called endovenous ablation. I have found some medical journals that address its use for LV but can't find any posts anywhere from people who have actually undergone this treatment. Has anyone else heard of this or had any luck with it? Thank you in advance for any light you can shine in our tunnel.
My hat is off to your daughter as I too was a hairdresser with my own business and I had to stop as the pain was too much when standing all day. (One thing they did say later, was standing still or sitting for too long is not good.) I have not heard of this endovenous ablation. Is that similar to having your veins stripped? If that is the case, a surgeon here did that the first time this happened to me after two other failed attempts. It did help but only for a short time…a couple of years for sure. I also had no idea and neither did they of what I was actually dealing with as the diagnosis came later. I am in Canada and we don't have nearly the same amount of information and help as in the US and a few other countries have. Right now I am the only person where I live with this so relying on any help I can get from wonderful people like here.
@angip83 and @msmerry welcome to Connect.
I'm tagging @zenk, and @logansnana, who also have experience with livedoid vasculopathy (LV) and may be able to help you find some answers.
@angip83 you must feel so relieved to have found a cause and solution. Did your rheumatologist explain why the immoglobin G (IgG) deficiency was causing the LV?
@msmerry, you mentioned that you were on pentoxaphylinne, but it stopped working. Has your doctor prescribed any other medication, and if so what are you now using to treat the LV?
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
Liked by Colleen Young, Connect Director
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.
Hi Zenk, @Thank you for your comment. Can you recall literature you found this in?
Hi Zenk, apparently your message did not come through. I only got "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
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!
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
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 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.
@zenk I have had LV for over 20 years and am Factor 5 Leyden, biopsy diagnosis about 10 years ago for LV. You mentioned an article in Lancet (1916) about Xarelto as a possible help for LV. If available, could you please give me the issue or page number of the reference? Wound care in ND isn't used to seeing LV cases and the current option they used on me (Apligraf) did not work due to an allergic reaction. I have been on warfarin several times for blood clots, and currently take 2 regular aspirin a day to keep blood from clotting. I think wound care will be transferring me to rheumatology or hematology after today because they have run out of options for treating my LV.
Thanks for your help, Sheila Sears Wichmann
I am so sorry I missed your post, Ethan. I am not used to the forums and how they work. No, my Dr. has not changed any meds nor has he done further testing to find out the underlying reasons. Mostly I am on my own so really really appreciate all of you guys! I see my GP again this Monday and hoping to go in armed with some information for him. We do not have the kind of specialists some of you have seen here. I have actually just started trying CBD Oils as they are now legal in Canada. I am staying as positive as possible but with the pain, I am wearing down quickly. I cannot get anything on my feet other than flip-flops or flat shoes that don't touch the top of my foot or ankle. We are in snow now…LOL, so this is a really fun time.
I just did some more research today and of course, it brought me back here so that has me smiling. I saw Rivaroxaban being tried and the report was dated 2018. I am hoping my Dr. will switch me to this. I think if memory serves me, it was in Brazil.
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