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Livedoid vasculopathy

Posted by @angelasmom in Skin Health, Aug 3, 2011

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.

Tags: Skin Conditions, auto immune disease, lividoid vasculopathy


Posted by @famalvar75gmailcom, Oct 5, 2012

My name is Alejandro, im 35 years old and was diagnosed 1 year ago with livedoid vasculopathy. I have atrophie blanche and livedo reticularis and I get very painful ulcers on my ankles. If anyone knows more about how to get good treatment please let me know


Posted by @angelasmom, Oct 6, 2012

Good morning Alejandro I am a 54 yo mom. I worked many years as a rehab therapist before LV forced me to retire as disabled. /this gives me some background in health that is helpful. I have atrophie blanche which is mostly helpful to help MDs diagnose us. I started to have ulcers 5 yrs ago .Diagnosed 3 yrs ago. Most importantly I've been in remission for 19 months. That is I have no ulcers. I have slight foot swelling and slight neuropathy.. As you may know the disease is not curable but we have periods of attacks or flares and if we are lucky and find what treatment helps us we have remissions too.
My theory is that L V is an auto-immune disease of the blood. The autobodies in our blood responsible for making scars that stop our cuts bleeding and kill germs malfunction and start making scar plugs in the middle of our tiny leg blood vessels for no good reason. This cuts off blood to the skin and starts ulcer.s. I am sorry if I am repeating info already familiar to you. Ignorance about LV amongst sufferers and doctors is our biggest obstacle.
Where are you being treated ? Do you have a dermatologist? I am keeping and reporting a list of treatment centers recommended by LVers for every part of the country and hopefully the world..
I take anti platelet drug dipyridamole and trental to increase circulation to extremities, I wear strong compression stockings daily because swelling triggers those clots and slows healing. Others take much stronger blood thinners hyperbaric oxygen and Intravenous immunoglobulin therapy
Really what you need to do is go to skin conditions group. Look up every post on lividoid vasculitis first then every post on livedoid vasculopathy. the on line community of Lvers has been our most powerful help against the disease. See you there Angelasmom .


Posted by @famalvar75gmailcom, Oct 7, 2012

Hi angelasmom,thanks for sharing with me what you've gone through I know it's not easy to live with LV. I've had LV about 6 years but was just diagnosed a year ago. Back in December 2011 I was hospitalized because I had a mega flare up! It was so bad that I got gangrene I had 3 really big ulcers the size of baseballs and I could not walk because of the pain and swelling.Thank God for a Dr. Named Dr. Marc Hare, he works at the center for wound healing and hyperbaric medicine,he went to see me at the hospital. I go to see him once a week for the ulcers and he diagnosed the LV, I also see a hematologist every 2 weeks to check my inr as I am on caumadin. In the beginning I was seeing a vein doctor and had some surgery done but as you said this disease has no cute yet, only the symptoms are delt with not the problem.i pray one day we may be cured of this disease, at the moment I am also in remission, oh and I also had skin grafts put on my ankles.


Posted by @angelasmom, Oct 7, 2012

Hi Alejandro Thanks for replying. Where is Dr. Hare and the wound care center? Would you recommend them to other LVers? Do you know anyone else with LV? You know I had skin grafts too! When my LV had slowed down I had not had new wounds for a year but 2 little ones were just hanging on refusing to close for 16 months Dr. Phillips at the Boston Medical Center put Apligrafts on me. lab grown skin made of stem cells. No problems since!. I found my cause of LV was cryoglobulinemia. That's when a blood antibody that only separates out of the blood in cold weather,cryoglobulin, causes clots. It's not that LV has no known cause. It has multiple contributing causes sometimes different for different people. If you are interested I will try to post a article listing the many possible causes. Some have been able to find their contributing factors and helped control LV. Article is also posted on under "Causes of Livedoid Vasculopathy. Angelasmom


Posted by @amjor2, Mar 11, 2013

hi friend....found this site while looking for any new info on LV.


Posted by @spence, Jul 13, 2013

Hi, I suppose I'm blessed I was diagnosed with LV a little over two years ago. Because of a very good podiatrist. I have since undergone a venous oblation on my left leg , I have been in compression stockings ( waist-high) ever since. Unfortunately my body nullified the surgery and my left leg is worse now. My right which had ulcers and is scarred up hasn't broken open again but...well you know how that goes. Whenever it gets hot the ulcers reappear. 🙁 but it could be worse. On the bright side my feet are somewhat famous being in medical journals for being a classic example of LV. I already had gout before this started and have mobility problems because of that. It was so good to find this forum. 🙂 having a sympathetic easr is important.


Posted by @angelasmom, Jul 18, 2013

Hi Spence I am sorry for your continuing ulcer problems and wish you some relief. Venous insufficiency for which you probably had your surgery is a contributing cause for LV but not the only 1. What meds do you take to stop the blood clots? Are you treated at Mayo?


Posted by @prairiesmoke, Oct 23, 2013

I had posted to angelasmom about 2 years ago concerning LV. I have had it for years, as apparently did my grandmother. Diagnosis was done 2 years ago by tissue biopsy. I had the aplagraf treatment and it partially healed the ulcer on my ankle. It took another year to heal the ulcer, which broke open again after 4 months. I am getting tired of being a guinea pig for doctors to practice on. The PA who finally figured out what was wrong with my ankle tried to get someone from Mayo to look at me, but apparently I wasn't bad enough for them to bother with, so I never got to talk to anyone who has actually dealt with a bunch of LVrs. If I sound unhappy, it is probably because the incessant pain and irritation from the ulcer gets me down after a while.

I can describe symptoms and if anyone out there has similar and has a way to help the LV, please let me know.
Symptoms start on my ankle as a small spot or sore that won't heal, but gets bigger. There is a redness around the area and tiny red spots like mini blood clots appear beneath the skin. The ulcers have been irregular in shape and often appear after a bump or bruise to the ankle, especially in warm late summer to fall weather. When the ulcer finally heals it is after the first of January and slowly granulates and fills in. It doesn't like being dry, or too wet. Medihoney keeps infections out, but the Ca alginate in the honey interacts with the exposed nerves in the ulcer and the thing burns like blazes for an hour or more after I change the dressing. (needless to say I don't change the dressing before I go to bed)

Cory70 likes this

Posted by @angelasmom, Oct 23, 2013

Hi Shiela My goodness this is the 1st I have heard of LV being hereditary
or perhaps your root cause disease being hereditary. That alone will be a
surprise to our small LV world. I hope if you live close
enough someday you will try Mayo again they have done much good for some
people. If you care to let me know your state I may have recommendations
for local medical centers from other LVers.Sorry about the failure of
apligraf but I always suspected if one were having a flare it would
sabotage the graft. nly worked for me because I had lingering old wounds
after flare died down. What meds for LV are you on ? what meds for pain
are you on? Thanks Angelasmom


Posted by @spence, Oct 24, 2013

My Hematologist tested me for a factor that decides if my hypercoagulability is a heriditary risk the (fortunately for my descendants and me) tested negative. Thanks angelas mom.


Posted by @angelasmom, Oct 24, 2013

Hi Spence I take it you have Livedoid Vasculopathy/Vasculitis? Do you
recall the name of the disorder your Dr was testing for or the name of the
test? Thank you.


Posted by @spence, Oct 24, 2013

I wish I could remember maybe if she starts a new practice soon I will be able to ask her all this healthcare stuff has chased some of our best doctors out of working for the speed hospitals I may have to find someone else and start over. 🙁


Posted by @prairiesmoke, Oct 31, 2013

Hi Angela's Mom,

I have been trying to write this, but every time I get started so more
trick-or-treaters come to the door. After reading Stan's post I think he
was being checked for Factor V Leiden in his blood. It causes blood to
clot more quickly than normal and people who have it are more prone to
getting blood clots. Over 20% of LVrs have Factor V. I have Factor V and
have had a number of small clots in my legs over the years. The ulcers on
my ankle appeared about 15-20 years ago. My grandmother had ulcers on the
same ankle, in the same spot off and on for about 40 years, I even have a
picture of her in her 70's with the ankle wrapped. I have a sneaking
suspicion if doctors who test people for LV were to test close relatives
who didn't have the ulcers they would find some of the relatives would have
LV, they just don't show the symptoms yet.

What have I had done to my leg to try stop the ulcers? I have had parts of
veins removed twice, been treated with infrared light and prostaglandins,
treated with high frequency ultrasound, had the ulcer injected with fish
oil, aplagrafted, wrapped in zeroform, patched up with medihoney, soaked in
vinegar water, dusted with turmeric, tried a jalapino pepper poltuce, etc.
I take aspirin, Tylenol or ibuprophen for the pain, and occasionally put a
bag of crushed ice or frozen vegies on the ulcer. There is some new
research out on using a low frequency ultrasound patch for 15 minute doses
that is supposed to stimulate tissue regrowth,but that is still in the
testing phase.

I am in Fargo, ND and the medical community does not know what to do with
LV patients. Wound care is about the closest we get here and they are used
to treating diabetics, not LV. If you know of anyone up this way, please
let me know.



Posted by @mlemieux, Aug 15, 2014

Sheila. Thank you for sharing!! I've tried a bunch of useless therapies as well. Have any of the above therapies worked even for a short time? I have massive ulcers on both legs which have been wrapped with; bandages and coban 2-layer compression wraps for 6 years now. I'm getting desperate to find something, anything that will work.


Posted by @prairiesmoke, Aug 15, 2014

Hi Martin,
You asked what has helped heal the ulcers. I have had only one ulcer on my ankle, about the size of a nickel now, off and on for almost 20 years. the ulcer seems to start up in the early to mid fall from a bump or bruise. Last August it just started up again after being healed for 4 months after apligrafts. The Dr. asked me if I wanted to try another graft but I said no. They cost a lot and for something that takes months to heal even after the graft and then breaks open again after only 4 months the thousands of dollars aren't worth it. I have a lot of skin allergies, so I can't use adhesives, or xeroform dressings, and NOTHING with latex near the ulcer or my whole ankle goes crazy with small blisters. I use medium weight TED stockings to hold on non latex containing wound dressings and medihoney(calcium algenate in it for structure) directly on ulcer to keep down infection. I clean the ulcer every day with a mild vinegar wash. I also get small red spots on toes and feet from the tiny aneurisms breaking in my capillaries. This gets worse if I stand for any length of time, and if I drive for long distances. I have to get out and move my legs, walk, dance, whatever. When I sit I have my foot up on a table, or a box at work. My ulcer doesn't like being damp, so I try to keep the moisture content of anything I put on it to a minimum. It will heal from the bottom up, but it seems to take forever. I take 2 aspirin at nite to try head off blood clots, and I take 2 ibuprophen in the morning to lessen the pain when I change the dressing on the ulcer. If I want to spend a miserable nite, I change the ulcer dressing before bed and then try to find a spot where the ulcer isn't touched by covers, or my foot, etc. This probably won't kill us, but it makes our lives painful and downright miserable at times!

Sorry I can't be of more help. What we need is a medical research team that analyses the proteins, collagen in our capillaries to find out why they form aneurisms. Is anybody in the medical department at Mayo listening? We need to know what is wrong with the proteins, why this happens and then we may be able to figure out a way to improve the system. I have been in genetics research for 40 years and this is a genetics problem. Genetics, factor 5 Leyden, poor capillary structure and LV are all interrelated. Figure out the how and why and then you may have a good chance of finding a solution we who have LV can live with. We on this list would enjoy being able to walk again without the constant aggravating pain of LV!


Posted by @angelasmom, Aug 15, 2014

Hi Sheila Hi Martin: Sheila if you wrote at Halloween time I sure did not
get the message. Where do you go for care? I live near Boston so I go to
the wound and connective disease clinics at Brigham and Women's Hospital a
Harvard Hospital. They are experienced at Livedoid vasculopathy maybe the
most experienced in New England.Yesterday Dr. Lin pronounced my last wound
healed after 6 months . That's the shortest time I've ever had a wound. I
have closed a 16 month wound with apligraft but it has stayed closed. This
time time the MDs debrided my wound and I used Regranex ointment on it It's
terribly expensive 2000$ for pack of 4 tubes,but with MD help insurance
covered it. It re granulates the wound. I covered it with Prisma ,adaptix,
gauze and Duoderm. For preventative medicine I use Healthy Feet ointment
over the counter for diabetic feet . It has alginate that increases blood
flow around the foot but is not but directly on wound. I also use Elastic
stockings 39 to 40 Hg pressure daily, dipyridamole/persantine 25 mg 3x day,
trental 3x day 400 mg. to increase blood flow. For pain I am intolerant of
aspirin products ( also why I have to take persantine to decrease blood
clotting. When pain was bad they gave me morphine in a gel. It only
affected my foot and was not absorbed to the rest of the body which was
awesome. I have also used lyrica but the most important thing is to avoid
infection.When the wound was open I took great care in washing my foot in a
separate basin never the tub,with an antibiotic presurgical soap.
I too tend to get wounds in fall. Is it the colder weather? Is it
seasonal allergens aggravating our auto immune systems which is also a
system that creates blood clots?
If you are in N.E. I would suggest Brigham and Women's. If not Mayo
must be the best hospital for LV in the rest of the country. Where do you
come from?
Some LVer's with worse cases than I have found great relief with Xarelto.
May i suggest where you will find a great variety of people
with LV due to different root causes and some with successful treatments


Posted by @mlemieux, Aug 17, 2014

Hi Angelsmom,

I completely understand your frustrations. After 6 Years, none of my wounds have closed or gotten smaller in any way. I was on Xeralto for a long time since I have to be on thinners for life after having blood clots on and off for over 18 years now.

For pain, I must take oxy 40's, 10's, Percocets, and anti-inflamatory pills daily. sleeping is a hasstle, my body naturally props one foot over the other to protect the wounds. having someone else in bed with me is always scary since they can easily kick my legs at any time.

I see Canada's leading wound care specialist; Dr. Sibald and his team, but even they are stumped. We recently put me on Innohep injections daily. Its low-molecular weight hepparin which is a known therapy for hard to manage LV and wound care. This treatment seems to have great effect on my legs, especially inflamation, and being able to see small changes in the size of my wounds. the only downfall of course is having to give myself more pain, and the bruising on my stomach.

Thank you for the idea of using a wash basin to wash your feet and legs, I have these plastic "cast protectors" which I got from Walmart online that allow me to strap my lower legs in the protectors to be able to take showers like a nowmal human being! that has been a huge boost in lifestyle.

its amazing how small things in life seem so wonderful.

I find eating 2 Activia probiotic yogurts is a must for keeping the wounds healthy and clean. Bacteria doesnt seem to stand a chance when I keep a regular healthy diet.

At the moment I have to change my legs twice a week which take up to an hour to do, coupled with massive pain. I used to go to a wound care clinic weekly, but now I only go once a month for supplies since they taught me to change my own legs. In the beginning others changed them for me, but would end up doing more harm than good, not to mention they would give me more pain from being careless. nowadays, no one is allowed to touch my legs lol I guess 6 years of experience with wound care has made me somewhat of a pro at it. if you can, clean your own wounds, only you know what feels best for them.

Im sure I have will have more to share later.

I wish you all the best, stay safe!


Posted by @angelasmom, Aug 15, 2014

Sheila can you travel to the Mayo clinic in Rochester Minn. and have them
consult with you local MD?


Posted by @prairiesmoke, Aug 22, 2014

Hi Angela's Mom,

Mayo sent some Drs to Detroit Lakes MN a couple years ago who were
associated with the LV group. My local practitioner who had done testing
on me when she figured out what was wrong with my ankle, contacted the Drs.
to try to get them to see me. They weren't interested, I am not sick
enough for them to be interested in me. What they don't seem to realize is
that they might just learn something from working with people who seem to
have some immunity to the disorder. After working in genetics research for
40 years I have seen first hand that it pays in the long run to look at all
the data, not just the parts that agree with your preconceived theories.
And yes, I do make some Drs. uncomfortable because I ask questions.



Posted by @spence, Oct 24, 2013

It may have been something called Factor VI


Posted by @spence, Oct 24, 2013



Posted by @mlemieux, Aug 15, 2014

I also have it. Been dealing with blood clots since I was 18, ulcers and Livedoid Vasculopathy for the past six years. I am really excited to have found others! I hope you're still active here and you get this message!


Posted by @spence, Aug 16, 2014

More diagnoses time. I've been okay as of late but still have persistent ulcers on my left foot. I'm on a blood thinner now (plavix) and the case has gotten more complex I was diagnosed with polycythemia.


Posted by @mlemieux, Feb 2, 2016

Hi all, not sure if you know, but there's another discussion on LV as well. Some good information being shared here:

Treatment options for Livedoid Vasculopathy (LV):

Martin Lemieux


Posted by @vickieb, Feb 2, 2016

Hi, I'm Vickie. I recently noticed this marbling on my upper thighs. Have extreme pain in my thighs, feels Like I've been kicked over and over again. I've had one small sore that only lasted a few weeks, and after reading the stories about them, I'm thankful and scared of when I get another one. I went to my dr he had no idea how to treat this. But over the past year I have been sick. I lost over 100 pounds, muscle and joint pain. Migraines and nystagmus developed, severe jaw pain. My dr , I'm sure thought I was just asking for pain meds which made me feel terrible. Then in December I get this very scary pain in my legs and felt so weak then the purple marbling. He sent me to a dermatologist who is certain that LV is the diagnosis and is doing the blood work and biopsy. After days and days of reading about this disease I had many of the symptoms for months before the skin changed. Has anyone else had this type of scenario? But I'm scared and feel alone. Anyone that has something to say I would greatly appreciate it. Thank you for reading.


Posted by @mlemieux, Feb 2, 2016

Hi @vickieb ,

Thank you so much for sharing! I just want to say, whether you have or don't have LV, you're NOT alone I promise.

LV Marbling:
Have you checked Google Images and searched "Livedoid Vasculopathy"? The images are not for the weak-stomach for sure, but are necessary to see if your marbling resembles similar cases. Your doctor is doing the right actions, a biopsy is necessary for determining factors that lead to a proper diagnosis.

Migraines & Pain Meds:
If I may, can you please list the medications you're on and daily amounts?

I only ask because not too long ago, I used to get small migraines daily and the cause was my pain medications. Since switching, my headaches have not come back.

Joint & Muscle Pains:
Also, I get a lot of joint and muscle pains, including nerve pain. Having the right combination of medications, treatments, and or natural healing methods is vital to help relieve the effects of LV and/or similar conditions. I find daily meditation, relaxation, incense and diet to be a strong factor in the quality of life one should have while dealing with these symptoms.

Weight Loss:
Do you suffer from spells of inflammation and pain? There's some studies showing LV connected to autoimmune diseases which can affect necessary organs and wreak havoc on your system. I'm not saying your weight loss and other systems are the cause of autoimmune, but it's something to consider discussing with your doctor. Loosing 100 pounds without an explanation is something that should be looked into and monitored before it becomes life threatening.

Jaw Pain:
I too suffer from this as well. I've had my jaw bone tested for infections just in case. You definitely want to consult a dentist for this. Infections in the mouth can cause all sorts of problems throughout your body, better to be safe than sorry. At the moment, I'm waiting to get in a specialized hospital for repairs on my teeth. Being on blood thinners is a very high risk of bleeding and dentists aren't usually setup to deal with surgical emergencies where are patient needs to be monitored. If you are on a blood thinner of any kind, make sure the dentist knows right away before you spend money on tests they cannot help you with.

What are the next steps that you need to take?
Has your doctor provided with a plan to tackle the: pain, weight loss and sickness?


Keep a journal:
Log ALL of your symptoms (i.e. pain, cramps, stiffness, tension, inflammation), this will help as you go. Also, I recommend keeping a journal of all medications, their known side effects and how you feel after taking them. Listening to your body is vital when it comes to dealing with LV spells and helping to prevent further damage to your body. Take pictures on a weekly basis to notice any changes in spots throughout your body.

Bring your journal to every doctor appointment. Show them your results, ask them to add to it, get copies tests results (as long as it's free).

I truly hope this helps!
Please keep us posted on your doctors visits.

Take care

Martin Lemieux


Posted by @vickieb, Feb 3, 2016

Thank you so much for your reply.
I have looked at the pictures of this terrible disease, I have the same look and have had a small sore. The dermatologist is pretty certain this is the diagnosis.
All the other symptoms I've experienced in rare cases have been seen in LV patients. I'm wondering if the blood work will show an underlying condition. I'm terrified of getting the sores. I have another one starting and so far it's still small. Mine is on both my upper thighs.

I am taking your advice and seeing my dentist.

I have been sick for so long and I just want an answer. And even if it is LV, I have that all awaited answer.

The Dr put me on Pentoxifylline.

Thank you again!


Posted by @mlemieux, Feb 4, 2016

You're very welcome @vickieb ... I fully understand the need to get answers (even bad news). Something is better than nothing that's for sure! I went through similar ping-pong games with my specialist until finally one day we narrowed it down. Knowing gives you options finally.

I wish you good luck, please keep us posted.

Take care!


Posted by @vickieb, Feb 4, 2016

Its just so wonderful having a place i can talk and learn!
Thank you


Posted by @swing1929, Sep 20, 2016

So after rivaroxaban treatment and a 10 month remission of ulcers I have 8 total on both feet. No insurance and no pain meds. Is there a homeopathic remedy I can use? Any ideas would be helpful!


Posted by @mlemieux, Sep 21, 2016


Hi Jenn, So sorry to hear about your situation. Theres an amazing book that has helped me out a great deal for home remedies to pain called:

"The end of pain"
By: Jacqueline Lagace, PhD and Jean-Yves Dionne

I highly recommend it which goes into detail on how to change your diet naturally.

I would also look into the "Fork over Knife" eating program. I am just starting this program removing meat and dairy to clear out the arterial system in order to battle wounds and clotting factors that contribute.

I hope this helps!
Martin Lemieux


Posted by @colleenyoung, Sep 21, 2016

Welcome back Martin! It's great to see you back on Connect. I know you've been busy sharing your patient experience with professionals, and a conference and more.

Jenn, I'm so glad that you chose to post a message to Connect after having followed the discussions for a while now. Welcome!
Have you been following this discussion called "Treatment options for Lividoid Vasculopathy (LV)"

@zenk @vickieb @marlene64 @gonefishinmt @patientrea do you have any thoughts about complementary therapies for LV? See Jenn's message above.

Ali Skahan likes this

Posted by @zenk, Sep 22, 2016

Hi Jenn, I am so sorry about your new ulcers. Mostly, I am sorry about your lack of insurance. As you have seen, Xarelto works for a lot of us in keeping the Ulcers at bay. Were you taking Rivroxaban when your ulcers came back? Can you afford just one trip to a dermatologist or a doc that knows your LV history? Sometimes they will give you some samples and direct you to a clinic that would treat you . As far as I know, there are no proven homeopathic products or treatments that would deliver blood supply with the needed oxygen to your ulcers so you can heal. I hope you can find a way to get to a doctor who is familiar with LV.
I know how expensive Rivroxaban is, I just got a refill at Walgreens today and I nearly fell on the floor. Keep in touch Jenn. You have been so kind to me in the past. Zenk

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