Mayo Clinic Connect
I am looking for outcomes in the use of blood thinners in the treatment of Lividoid Vasculopathy
Welcome to the discussion group and thanks for sharing your story. I hope you’ve had a chance to read some of the previous posts on the subject of LV. There are several threads going on LV topics, so please look at all of them for information, answers and suggestions. I’m sure @colleen_young can help with pointing you in the right direction.
For all – I appear to be having positive results with EpiFix and with DuoDerm, although its only been one week since I started on both. Will keep everyone up to date on my progress using these treatments. BTW for everyone’s information, both EpiFix and DuoDerm are considered to be treatments so thus far are covered by Medicare Part B. I was denied use of CellCept under Medicare Part D (Rx meds).
Liked by Colleen Young, Connect Director, Martin (Founder ClotsMatter.ca), aimeenc
Thank you for sharing your story. It’s interesting that DuoDerm apparently aggravated your LV ulcer(s). I’ve just started to use DuoDerm, but I should be clear that it’s only on ulcers that have scabbed over, but won’t progress any further. These are not the classic punched out painful open LV lesions that they were a year ago. My one remaining stubborn open ulcer is receiving EpiFix, a dehydrated human amniotic membrane. We’ll see how that goes.
Keep the faith as well as your outlook well fed and happy. In life, as in sports, a positive attitude often is the difference between winning and losing.
Liked by Martin (Founder ClotsMatter.ca), aimeenc
This topic here is probably one of the most comprehensive topics online concerning LV so please keep the ideas coming. I’ve searched for years for answers online and haven’t found many. Some few studies keep popping up here and there, and as they do, I’m sure the members here will make them available to us.
As @gonefishinmt pointed out, as time goes on, it’s get’s harder and harder to do normal activities. I’m 37 now and I cannot do 1/2 the things I used to. The mental-game this condition delivers is a very tough battle. I tend to look at life differently now with a new perspective without playing the “poor-me-game”. It’s easy when someone is suffering to drag others into their suffering. Stay strong, be a positive role-model like so many here are (It’s an honor to know them) and reach out when you need help.
LV=Suffering there’s no doubt about that. But i’ve found admits that suffering, there’s potential for a lot of hope. When I tell my story to others and do it with a smile, suddenly all of their problems go away. They remember how beautiful and precious small things are like, “going on a daily walk with their dog”. Those are the kind of things that inspire me and keep me from the black-pit of despair.
Dealing with LV is a lifelong battle, but we are not alone in this battle. Take comfort in this, for anything that helps you fight just a little harder, to ask one more question, to look forward to one more test is a step closer to helping all of us at the very same time.
Thanks all for sharing such powerful messages and opening new possibilities.
Liked by gonefishinmt, aimeenc
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@gonefishinmt Thanks for making the introduction to @aimeenc. Welcome to Connect Amiee and especially this growing group of people sharing about LV.
There are a couple of other active discussions that you might also like to read.
I’d like to tag @ceejay and @vickieb to join this discussion, then I think we’ll have all the active LV Connect members together.
Liked by vickieb, aimeenc
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.
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.
Liked by Martin (Founder ClotsMatter.ca), gonefishinmt
@aimeenc – I’ve not had a wound care specialist and only heard the term when I joined this discussion group (I live in a relatively small city in MT). The primary care doc for this condition is a dermatologist. I’ve also been seen a number of times by 3 different rheumatologists, my family doc (pcp), 2 other dermatologists and a vascular surgeon for this condition. The vascular surgeon was certain my problem was leaky veins and in 2012 he used a laser to destroy the greater saphenous vein between my groin and ankle (They used to physically strip the vein out, but now most use a laser to essentially cook it in place). This made absolutely no difference in LV ulcerations in the long run. My wound care is guided by my dermatologist and my wife who is very tuned in to this subject. The derm. doc is very good at consulting with and referring me to other specialists. But it is essentially left to my wife and I to determine the best wound dressing techniques to use at any given time.
Good luck with your treatment.
Took me a while, but I finally found the three-page printout detailing studies/medications/treatments for Livedoid Vasculopathy. I myself have tried most of these treatments, but it doesn’t mean that it won’t work for you. As far as I know, this is the only comprehensive study and recommendations out there to date.
Book Reference: Treatment of Skin Disease: Comprehensive Therapeutic Strategies
By Mark G. Lebwohl, Warren R. Heymann, John Berth-Jones, Ian Coulson
Pages 414, 415, and 416
Page 414 added here (415 & 416 to come).
Liked by aimeenc
Book Reference: Treatment of Skin Disease: Comprehensive Therapeutic Strategies
By Mark G. Lebwohl, Warren R. Heymann, John Berth-Jones, Ian Coulson
Pages 415, and 416
Wow, not sure how I found this website but am happy I did. I am going to be 52 this year. When I was 37 I woke up one day with a solid DVT that went from left ankle up to the top of my stomach. I ended up being in three hospitals for a total of six weeks. Diagnosed with Factor V Leiden and May Thurner Syndrome and some protein something. I have a 14″ stent in my iliac vein in my stomach to keep it open as without it, my iliac vein would rub against my iliac artery and cause another blood clot. It took three rounds of thrombalitic medicines, three trips to ICU, and six weeks in the hospital to get the clot broken up. I will be on lifelong coumadin therapy and have slept with my legs elevated since 2002. I wore compression for the first several years and then quit, but I’ve had to start wearing them again because I have such terrible pain, especially at night.
Recently, my husband noticed the back of my leg looked different – a network of blue veins underneath my skin – really strange looking. Because I’ve had such terrible pain with my bad leg, I made an appt. to go back to see the interventional radiologist who took care of me since 2002 and off and on since. He acted like he didn’t know what the condition was. Sent me home and told me he’d recheck me in six months but since he didn’t seem to know what it was, I’ve been obsessed with trying to figure it out.
After a lot of time reading and studying, I am scared and worried but am pretty sure I have LV, so I’m hoping you can help answer some questions I still have:
1.) Everyone keeps saying if you have Factor V Leiden, it’s the opposite of LV, or it works against LV? I’m not sure I’m following why that is. The Factor V causes blood clotting and I take coumadin to keep my blood thin. What affect does that have on LV?
2.) I have pain in my leg, terrible at night or when I’ve stood for a while or sat too long. The only thing that feels good is a heating pad. Because of the blood thinner (a high dose of 10 mgs/day), I’ve been told not to take NSAID’s because they will destroy my stomach, so I do without any except when I just can’t take it any more. Do you guys have the kind of cramping and pain. I used to refer to them as growing pains but sometimes they’re sharp stabbing pains, too.
3.) Right now I have no ulcers – thank you, God, but everything I have read it sounds like the LV rash/network of blue dark veins under my skin might be the predecessor to future ulcers? To be truthful, reading all of this really scares me about the quality of life that’s ahead of me. When I first had my DVT in 2002, I was 37 and still very active. Now just 14 years later, my quality of life has changed. It’s not just that I’m older. I have so much more pain and my legs feel like their 30 years older.
4.) It’s getting more difficult to work because I don’t sleep well at night any more. Are you all still working? Do any of you receive disability? I’m not sure how you would work with the ulcers you describe. I’m so sorry to hear about them.
5.) I’m not sure what doctor to go to first? I have a brand new internal med doctor who I could try but after the interventional radiologist acted like I was from Mars, I kind of want to make sure I find a doctor that has a clue about what this is. Fortunately, I live near St. Louis, MO, so we have some incredible hospitals that would offer wound care, etc., if that becomes necessary down the road. Do I try to find a dermatologist for this. It seems like it’s more a vascular disease but everyone is using a dermatologist so I’m not sure about who first.
I look forward to learning from all of you. Thank you.
Liked by Colleen Young, Connect Director
I’m sure you’ll receive a number of replies to your several questions. Just so you know you’re not alone in this disease tonight, I thought I’d chime in with a couple of things. I can’t speak to the effects of Factor V Leiden as I don’t have it. I do have LV ulcers and pain. and was forced to retire because of the pain and the medications that I was taking to control the pain. I’m 73 now so being retired doesn’t bother me so much, but I was definitely not ready to retire a few years ago.
LV pain is definitely worse in the evening and at night. I also have a serious case of restless legs so this compounds the situation and the need to maintain a good schedule for taking meds. Its important to get your meds balanced as to when you take them and in what dose and combination with other drugs to be able to carry on a reasonable life and to avoid the pain peaks that can plague you if you don’t. A physician should be consulted when you attempt to balance doses, combinations and time of taking them. It is helpful to have one doc that can do this for you. It doesn’t necessarily matter what his specialty is, as long as he/she is willing to work with you and your other docs to accomplish the best results.
Your meds can definitely affect your sleep as well – another argument for getting them balanced as best you can. I have not had DVT’s so not much help there. Have to sign off now – before I get swallowed up by the need for sleep…
Liked by Colleen Young, Connect Director, Martin (Founder ClotsMatter.ca)
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.
Thank you so much for the good advice!!
Liked by Martin (Founder ClotsMatter.ca)
I use medihoney for debridement of dead tissue and for antibacterial effect
on my open ulcer. I tried apligraft on ulcer and it healed partially, then
took another year to heal fully but degenerated after four months and was
back to open ulcer again. Grafts will work for a while, but if the
original problem is that the capillary walls develop leaks, the graft may
not address this problem. When I looked at faulty sperm bundles from moths
under electron microscopy, the fibers holding the bundles together would
get vertical tears in their fabric (like a run in a nylon stocking). The
more pressure you put on the bundle (they are long and thin like a
capillary) the more they will tear. Some of the moths had bundles with few
tears and some were torn so badly that they were shredded (this was a
genetic problem that has a variable effect). Until science can figure out
WHY our blood vessels are weakening and tearing we will continue to have
problems. Ask your doctors if anyone has actually looked at our LV
capillaries with a scanning electron microscope that shows things in 3D or
are they still looking at light slides or transmission electromicrographs.
A picture here might well be worth 10,000 words at explaining our condition.
I have tried a number of unorthodox procedures on my ulcer over the years.
I have sprinkled small amounts of powdered turmeric on the ulcer to reduce
chances of infection (this is used in India as a paint on bare feet to
reduce infections). I had one dog who would go crazy when my ulcer started
to get even a slight infection or buildup of dead tissue, he would try to
lick the ulcer and clean it. He did a better job of cleaning the ulcer
than the doctor and it didn’t get infected afterwards. I have also used
mashed jalapino pepper on the ulcer to get rid of infection (capsacin in
pepper is an antibacterial) but this is extremely painful. I have never
tried pot for the pain, but my brother who has a license to grow it for
medical reasons (4 ruptured discs in back) says that it helps with chronic
pain. Many states are now legalizing medical pot or are looking at it as an
alternative for intractable pain and nausea.
I have been suffering with LV for 6 years. The open ulcer I have now on my foot is getting bigger and very painful. I am on Xarelto 15 mg and have been seeing wound care on a regular basis. Has IVIG helped close existing ulcers for any of you? Thanks, Zenk
You’ve been taking Xarelto for awhile now. Is it proving to be effective in your case?
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