It is sort of active. I look at it when it pops up, but don't know how
many others do. I have had LV for over 20 years.
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I am taking 2 regular aspirin a day for blood thinning. I have been on warfarin in the past for blood clots in legs and lung. I have been leery of trying stronger pain meds. I am in a test study now with a new grafting material made from placental tissue. It has worked somewhat, but it is a slow process. I talked to my regular Dr. about Xarelto, but she seemed to think I was ok with aspirin as a blood thinner. I also have factor V Leiden, which aggravates the blood clotting. Sheila
I don't know if anyone is monitoring or not. I asked a question over 6 months ago and got no reply. I have had an LV ulcer on my ankle for 25 years. It has not healed in the last 4-5 years, and the pain, which seems to hit without warning, is like boiling water being poured on the ulcer. I take aspirin in the morning and Alleve at bedtime for pain. It dulls pain somewhat. When my ankle hurts I put my feet up and try to concentrate on something else (TV, games, book, etc) until the pain goes away. If I wake up and the pain starts I try to lie so that nothing touches the ulcer, and relax my muscles. I can not stand in one place for very long, as this aggravates the ulcer, and I can not walk or work moving around for more than a half hour at a time or I pay for it later in the day. It is depressing at times. Hang in there, you are not alone!
@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
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 wouldn't dare use cortisone 10 anywhere near my ulcer. it is in a strong enough dosage to irritate the skin and it will thin the skin with repeated use. When the skin thins the ulcer is more likely to enlarge as it breaks down the fragile skin. I was on a week cortisone compound for months but my skin thinned and ulcer got bigger. the doctor warned me about the thinning. I read the whole list of ingredients on anything I put on my skin before I buy anything and I look at the chemical structures of the ingredients. I react to things and it may take hours or days for the reaction to show. And I keep a list of preparations, medicines that I react to. Cortizone is a double edged sword,,,,, just depends on which edge you are dealing with.