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I am looking for outcomes in the use of blood thinners in the treatment of Livedoid Vasculopathy
Interested in more discussions like this? Go to the Skin Health group.
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.
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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…
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.
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!!
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?
@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.
@prairiesmoke – Sounds like you’ve spent some time in a bio-science research lab. Your point is well taken. Even though LV wounds may heal, as long as the underlying disease is still present, more breakouts are almost inevitable. We know a fair amount about the mechanism of LV. Now if we only knew more about what triggers an episode, we may be able to do something about the long term effects of our disease.
Some of the wound care techniques you describe may seem a bit un-scientific, but I remember reading a study by some medical researchers, that concluded that behind many successful home remedies, native cures, poultices, etc, there often is a solid, but unrecognized scientific basis.
Thanks for sharing. I agree with you that more LV research should be conducted at the molecular level if we are ever to fully understand this disease that affects us all.
I know exactly what you’re going through. When I read your post I said to myself “oh my, that’s me in a nutshell right there”. First off, I’m very happy you found this post, you will be able to learn a great deal from everyone here. @gonefishinmt is a great man who’s been through a lot as well and has some amazing insights as I do.
To answer your questions in sequence:
1) Factor V Leiden & Livedoid Vasculopathy:
It’s becoming more and more known that these two conditions go hand in hand. Around when I was 23, I learned I had FVL. About 10 years ago, my 1st wound opened up, at first they called is Rheumatoid Vasculitis and my Dermatologist then discovered it was in fact Livedoid Vasculopathy.
You probably “learned” that they fight each other because of the posts I make. They do fight each other and here’s why. FVL – clots bruise your arteries. The clot stretches the artery while blood is trying to pass through. LV inflames the arteries even more, allow seepage of blood to escape and pool in different areas of your body (most commonly within the outer skin layers of your legs). Now consider this, we are lifer’s on blood thinners correct? So thinning your blood only fuels LV to increase the blood loss within the arteries. Hence the battle continues. When I try to treat FVL, my LV ulcers get worse, when I try to battle LV, my clotting factors increase. Thus creating a never ending cycle.
Right now I’m doing my own trials on different thinners to see which ones react better with LV. I’ve been on most blood thinners and each one reacts differently. The key for me is to be able to find the right balance between the two to allow my wounds to heal (open now for almost 10 years)
2) Pain management:
This is KEY for your mental health. Please take my recommendations to your doctor immediately. There’s always different reactions for different people, but after years of experimenting with the right combination, here’s what works for the exact same symptoms your mentioned above.
Inflammation: Naproxen 500mg / x2 daily
Relives pressure and inflammation (key***)
Pain: Ratio-Oxycocet (perks) 4-8 / x4 daily
Relieves most pain (key***)
Try different types if the perks aren’t enough (I stay away due to mind fog)
Pain Spikes: Tizanidine 4mg / x2 daily
These will take away the nerve ending spikes that you get (key***)
If you find your moods are always up/down, it’s probably due to the pain. Ask for options
Stomach Ulcers: Pantoprazole 40mg / x2 daily
Prevents heartburn and stomach ulcers from all the meds (key***)
I’ve been in pain most of my life and people are amazed when they find out years later on how much pain i’m always in. I rarely show it and it’s because of years of experimenting getting the right combination of medications that help with FVL & LV.
——- End pain management ——-
3) LV rash/network of blue dark veins:
That’s exactly how it all started for me. I had a really dark reddish/purple spot at my lower ankle for over a year until it completely tore off, only then did I seek help (my pride was my downfall). If you have these signs, go see a Dermatologist immediately and bring the fact sheets I posted earlier. I wish there was a discussion like this 10 years ago, I would of been able to change my diet to suit my health a lot better, and I would of started a lower-body exercise program to increase blood flow and strengthen my muscles.
4) I am on disability:
Again, it took me a long time to accept my new life and the limitations I have. But that doesn’t mean you cannot work, it just means we need to work at a slower pace, and an environment that better suits our illnesses. At the moment I volunteer from home. I’m the Patient Ambassador for Thrombosis Canada and also help in many other avenues (ie. Mayo Clinic Connect). Being on disability isn’t the end, instead it’s the beginning to asking for help. Through income support, medication support and other support programs, you can start to get access to resources you never had before. This process takes a lot of time and effort, I recommend you start asap just because of the amount of time it takes. Once approved, you have options and don’t have to stay solely dependent on disability alone, you can then work at your own pace.
5) What doctor?
Dermatologist first. The dermatologist will be the one to make the call for LV (usually). They can also set you on the right path if you start to show skin irritations. There are some creams and what not that actually harm your chances, or otherwise deteriorate your skin faster than normal (i.e. some topical ointments thin the skin layers). The key is to also ask about the “right” diet appropriate for you. I was told a high-protein diet is the key for my body to increase blood flow and help to health wounds. Less processed food (given for anyone) and a boost of vitamins (Which I buy high-end water drinks with added vitamins).
2nd a vascular surgeon is necessary also. They can help to manage your FVL, while also watching out for different signs and symptoms related to LV. Avoid having only one specialists making all the decisions. My dermatologist manages my wounds, while my vascular specialist maintains my blood flow, while my regular MD records and watches all specialists. Your network need to work together.
There’s a 3rd possibility also, you may have “PTS” Post Thrombotic Syndrome which is common with people who have FVL. PTS symptoms include chronic leg pain, swelling, redness, and ulcers (sores). Talk to a “thrombo” specialist, specifically a Hematologist who’s familiar with PTS.
6) Compression Stockings:
Also, if you don’t already. I would start looking into compression stockings. These are key to maintain proper blood flow for FVL and preventing LV from flaring up further. My legs have been wrapped with compression bandages for many many years now. When I removed them (to change them), my legs start to swell right away cause a lot of pain. Find the right “fit” for you. Start with light compression and work your way up as needed.
I hope this helps you. I know how scary this might all be, I’ve been through it myself. You haven’t found out if you have LV yet, but take it from me, FVL is a pre-cursor to LV. I’m finding more and more studies that support that fact. Don’t wait to see your regular MD, make notes of everything you’ve learned here and ask the right questions, push to go see these specialists.
Martin R. Lemieux
Glad to see you’re back on the post and congratulations on being named Patient Ambassador for Thrombosis Canada – a well deserved honor! You are a wonderful resource for all of us on this post and I for one am grateful for your shared wealth of information.
@gonefishinmt Thank you so much Gary. I’ve always said, if you’re going to suffer anyways, might as well try to help others to prevent them from going down the same path.
I’ve also truly appreciated your posts as well. They lit a fire under me to start sharing more and learning more through your shoes.
Have a great day!
Sorry it’s taken me a few days to think over your advice but I think I’m ready to ask a second round of questions of you:
1.) You recommended I read the 3-page attachment you posted previously on LV treatments. On page 2, column 2, it mentions individuals who have LV that were found to also have anticoagulant (sp?) were helped by taking coumadin, a blood thinner but in your post above, you mention a disorder like Factor V Leiden works against LV, so I guess I’m still confused which way it is.
2.) Right now, I have the livedo reticulitis pattern of blue weblike veins (below the skin) on the back of my left calf. Did your LV start out with this type of vein pattern on the back of your leg? If so, how much time passed before you started experiencing ulcers on your leg?
3.) I read LV occurs bilaterally in both legs. Do you have LV on both legs? If LV is connected to the Factor V Leiden I have and the extensive damage done by the massive DVT I had in 2002 (top of stomach to left ankle solid), then could I expect my right leg may be safe from LV?
4.) Somewhere I read that you aren’t fond of coumadin and its side effects. I’ve been on coumadin since 2002 at a pretty high dose of 10 mg/day. Recently I learned about eloquis but my general md is hesitant to let me switch. What are the long-term side effects of coumadin?
5.) I live in Illinois, across the river from St. Louis, where there are several great teaching hospitals. I am surprised, however, that the interventional radiologist, who has treated me I developed my DVT in 2002 and who monitors the stent in my stomach due to May Thurner Syndrome, didn’t recognize or seem to know anything about LV. Do you possibly have any names for a dermatologist or a vascular doctor in my area who might be familiar with LV?
6.) You mention I should go see a dermatologist now. Is there a way for a doctor to diagnose if it’s LV or not without an ulcer to biopsy?
7.) I am wearing my compression stockings during the day religiously and I sleep with my legs elevated, but I still have terrible, achy leg cramps in the affected leg all night, every night. I get some help from sleeping with a heating pad. Did the LV cause you pain before the ulcers presented themselves?
Again, thank you, for your valuable insight and wonderful, positive outlook.
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.
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