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angelasmom (@angelasmom)

Livedoid vasculopathy

Blood Cancers & Disorders | Last Active: 4 days ago | Replies (227)

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@prairiesmoke

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)

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Replies to "I had posted to angelasmom about 2 years ago concerning LV. I have had it for..."

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

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.

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.

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. 🙁

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.

Sheila

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.

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!

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 Inspire.com where you will find a great variety of people
with LV due to different root causes and some with successful treatments

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

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!

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.

Sheila

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