I take 2 regular aspirin a day for clotting control, and Aleve for pain control in the evening.
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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.
I agree with you about keeping the ulcers drier. I have been changing dressing twice a day on my ankle ulcer. I have to watch if I drive for very long or stand in one place talking to someone. I will have to pick raspberries sitting on a stool this summer. I get tiny blood clots in capillaries in the ulcer and that make the ulcer worse if I don’t move about or keep my feet elevated. When I get a micro clot the ulcer is really painful until the clot pops or is resorbed. I take 2 regular aspirin a day for blood thinning, have had warfarin but it didn’t affect ulcer.
2 aspirin dull pain for about 2 hrs., Aleve dulls pain for about 4-5 hrs and Tylenol doesn’t do much. The Aleve is the best of the lot for pain relief. When pain gets bad I try to concentrate on something else until the pain moderates. I watch tv, read, or think about something else and try not to move my ankle. Any pressure on the ankle from covers, blankets or movement tends to aggravate the pain. I rarely sleep more than 3 hrs at a time due to the pain, but have gotten pretty good at putting up with or ignoring it. The new coloring books for adults also are a good way to direct my mind into non pain channels.
My LV appears to be caused by capillaries that get bulges or aneurisms in them that leak plasma and rupture. I saw the same type of bulges and aneurisms in electron micrographs that I took of the membranes around the sperm bundles of a hybrid moth. The damage to the membranes was so severe that it rendered the moths sterile because the sperm fell out of the bundles before they got to where they were supposed to go. In 3 dimensional micrographs the damage was spectacular. I bet my capillaries would look about the same damage wise!
As I read through the emails I get the impression that there is a great
difference between time of onset of LV (earlier in life vs later in life)
and also the severity of LV (small lesions versus large ones). According
to Mayo notes aproximately 20% of people with LV have Leiden Factor V for
blood clotting. I know 2 other people with Factor 5, one of my daughters
and a distant cousin and neither of them appear to have LV. My LV diidn’t
appear until after 40 and was agrivated by a wound to my ankle, as was my
grandmother’s LV. Our LV was localized to the ankle area. Many on this
list have severe LV that covers large areas of skin. I think what we are
seeing is a genetic trait with partial dominance and/or incomplete
penatrance. How many of us have close relatives with Factor 5? How many of
us had injuries to our legs, ankles or feet PRIOR to getting LV?
My younger daughter does not have Factor 5, but to be on birth control
pills was told she needed to be checked for Factor 5, since both me sister
and I have Factor 5. Factor 5 is inherited, most probably from my dad, who
seemed to have blood that clotted very quickly. When my younger daughter
was born I had at least a dozen surface clots on each thigh, I had the vein
removed in two surgeries but it did nothing to stop the LV ulcer. A
vascular surgeon did surgery and then tried injecting the veins in ankle to
stop LV. That didn’t work,only made the whole area turn brown and small
pinhead size blood clots appeared. That was about 15 years ago. A young PA
in the dermatology clinic figured out that I had LV about 10 years ago.
Wound care since then has been not all that helpful. They used an
experimental sonicating treatment to help with wound healing, but the
machine operated at 10 times the speed needed for optimal healing and
destroyed the tissue I did have that was healing. They also kept putting
nonstick pads on the ulcer that had latex in them. I am allergic to latex.
If you have latex allergies please watch for warnings on Telfa and other
My LV starts as small blood clots that then rupture creating a hole in
skin that leads to more tiny clots that then rupture and make more holes
and pretty soon I have an ulcer. I also get tiny clots on soles of my feet,
then the skin peels like it would for a regular blood blister. If I use a
cortizone cream on the area around the ulcer to reduce the inflamation, my
skin thins and I get more and more of the tiny clots and that make the
ulcer larger. Please be careful when using cortizone or its derivatives.
My doctor has me on 2 regular aspirin a day for blood thinning, and I eat
dark chocolate to help keep veins flexible (best excuse I ever found for my
chocolate cravings). I have taken warfarin for clotting and also the
injectable blood thinner, they didn’t seem to affect the LV either way.
This has gotten pretty long, but I have tried to outline what I have found
to work and not to work (mostly what didn’t work). It really helps if you
have a doctor who listens to you, takes you seriously and isn’t afraid to
think OUTSIDE the box.