Sheila can you travel to the Mayo clinic in Rochester Minn. and have them
consult with you local MD?
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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
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
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
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?
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 Inspire.com under “Causes of Livedoid Vasculopathy. Angelasmom
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 Imspire.com 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 .