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Treatment options for Livedoid Vasculopathy (LV)
Skin Health | Last Active: Dec 14, 2023 | Replies (70)Comment receiving replies
All:
Re use of EpiFix - I've now used EpiFix (dehydrated amniotic membrane) on one stubborn LV ulcer for about 2 weeks now and so far results appear positive. This is a relatively small ulcer, about 3/4 inch diam, but deep and prior to EpiFix, resistant to other treatments attempted. The EpiFix membrane is ultra thin and is intended to absorb into the wound. I'm on the second application now and will have a third as soon as the current one has been sufficiently incorporated into a wound cover. The applications are not painful. Treatment protocol is that the membrane is applied and covered with telfa pads (2) soaked in sterile normal saline. This is then covered by a dry telfa pad and then the wound area (ankle in my case) is wrapped in cotton gauze. It's necessary to keep the membrane hydrated so this procedure is carried out a minimum of three times a day. More frequent hydration is better if it is possible. So far it appears to be having a positive effect, but it's early in the process. I'll keep the group informed.
Re use of DuoDerm - Several scabbed over ulcerated areas were covered with DuoDerm, a thin non-dissolving artificial membrane, followed by telfa pads and a gauze wrap. The outer wraps (gauze and telfa's) were changed twice daily. After five days, the DuoDerm was removed (peeled off). The DuoDerm caused the scabs to dissolve and the ulcers to open. They remain somewhat painful. My doc thinks this was a success in that those old ulcers were debrided by the DuoDerm, which he believes is necessary to overall healing. I'm not so sure I would recommend DuoDerm however. I think it would depend on your specific conditions - DuoDerm is not a healing membrane in the sense that EpiFix is. It does not dissolve or become a part of the healing tissue. It is good for wound debridement if that is something you need.
Replies to "All: Re use of EpiFix - I've now used EpiFix (dehydrated amniotic membrane) on one stubborn..."
Hi All:
Update re the use of EpiFix - I had EpiFix applied to two stubborn ulcers. I think they did two applications on one ulcer and three on the other. The ulcer with two apps healed rather quickly - at least in terms of LV time which seems to be much longer than normal time, if I'm making sense. It wasn't as deep as the ulcer with three apps, which is doing ok, just not healed over completely yet. So I think the net result is very positive for EpiFix. I'm told its very expensive, but I have yet to see any bills. For those of you who may not know, EpiFix is essentially dehydrated freeze dried amnionic / chorionic membrane taken from human placental tissue (only from full term deliveries).
My doc is also treating a patient with an ulcer much larger than mine. Its something like 5 in x 10 in, so a very large area. They are using the largest pieces of EpiFix they can get. I will encourage my doc to encourage his patient to join the group here so we can get a report on how well that's going.
All for now.
I use medihoney for debridement of dead tissue and for antibacterial effect<br />
on my open ulcer. I tried apligraft on ulcer and it healed partially, then<br />
took another year to heal fully but degenerated after four months and was<br />
back to open ulcer again. Grafts will work for a while, but if the<br />
original problem is that the capillary walls develop leaks, the graft may<br />
not address this problem. When I looked at faulty sperm bundles from moths<br />
under electron microscopy, the fibers holding the bundles together would<br />
get vertical tears in their fabric (like a run in a nylon stocking). The<br />
more pressure you put on the bundle (they are long and thin like a<br />
capillary) the more they will tear. Some of the moths had bundles with few<br />
tears and some were torn so badly that they were shredded (this was a<br />
genetic problem that has a variable effect). Until science can figure out<br />
WHY our blood vessels are weakening and tearing we will continue to have<br />
problems. Ask your doctors if anyone has actually looked at our LV<br />
capillaries with a scanning electron microscope that shows things in 3D or<br />
are they still looking at light slides or transmission electromicrographs.<br />
A picture here might well be worth 10,000 words at explaining our condition.<br />
<br />
I have tried a number of unorthodox procedures on my ulcer over the years.<br />
I have sprinkled small amounts of powdered turmeric on the ulcer to reduce<br />
chances of infection (this is used in India as a paint on bare feet to<br />
reduce infections). I had one dog who would go crazy when my ulcer started<br />
to get even a slight infection or buildup of dead tissue, he would try to<br />
lick the ulcer and clean it. He did a better job of cleaning the ulcer<br />
than the doctor and it didn't get infected afterwards. I have also used<br />
mashed jalapino pepper on the ulcer to get rid of infection (capsacin in<br />
pepper is an antibacterial) but this is extremely painful. I have never<br />
tried pot for the pain, but my brother who has a license to grow it for<br />
medical reasons (4 ruptured discs in back) says that it helps with chronic<br />
pain. Many states are now legalizing medical pot or are looking at it as an<br />
alternative for intractable pain and nausea.<br />
<br />
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Thank you for the update & wonderful information you shared. May I ask who prescribes your wound care regimen? Is it a wound care physician? Do you also see a vascular surgeon? I'm being managed by rheumatology, hematology (blood thinner management), dermatology, & wound care. However, I recently had to switch my wound care from a hospital with wound care physicians to a hospital with only Physical Therapists (due to insurance). I've not been too happy with my new wound care PT as I feel she knows very little about LV & that I basically have to recommend my own care. So I'm very thankful for posts like yours, to give me ideas to recommend to her! I've also wondered if I should be seeing a vascular surgeon as well & wondered how many other patients with LV did so.
I'm still so thrilled I found this site. After reading all of the old & new posts, I no longer feel so all alone with this crazy illness.