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Treatment options for Livedoid Vasculopathy (LV)

Skin Health | Last Active: Dec 14, 2023 | Replies (70)

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Hi @marlene64,

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***)

Opiates (optional):
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***)

Moods: Antidepressants
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.

Take care!
Martin R. Lemieux

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Replies to "Hi @marlene64, I know exactly what you're going through. When I read your post I said..."

Hey Martin,

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.