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May 18, 2016 · Treatment options for Lividoid Vasculopathy (LV) in Skin Health

Hi @mlemieux,

I’m sorry to hear you’ve developed new ulcers and am glad you have doctors who work with and listen to you about your needs. I have taken a similar injection, Lovenox, at different times. I’m fortunate in that I have never had to give them to myself, which maybe has made it easier. By the time I’m done with a series, my stomach is variety of purples, yellows, greens, etc. I’ve attached an article that gives a lot of good suggestions on how to help prevent the bruising from them. When you talk of the pain you’re dealing with, is it from the ulcers themselves or from your veins/arteries? I have found a heating pad provide comfort to my leg pain but perhaps having the ulcers changes things.

It’s okay to feel angry but don’t let it drag you down. You are an inspiration to those of us still trying to figure all this out. Please take care.

Marlene

May 13, 2016 · Treatment options for Lividoid Vasculopathy (LV) in Skin Health

Hi PatientRea, You are further along in your diagnosis and treatment than I am. I am waiting to get into the well-respected dermatologist here in the St. Louis, MO, area. I did verify with her medical asst. she is ‘familiar’ with LV but will know more when I get there. Thankfully, I have had no ulcers to date. Am hoping they can biopsy from what I do have, which is the dark blue/red reticularis on the back of my leg. I have terrible pain in my leg most nights and some days so I guess I also have post thrombotic syndrome. My story is above. I have found this site and the advice given on it to be most helpful & everyone so very kind. I wish you the very best on this journey and if I can be of any help, just ask.

Apr 11, 2016 · Treatment options for Lividoid Vasculopathy (LV) in Skin Health

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.

Marlene

Apr 2, 2016 · Treatment options for Lividoid Vasculopathy (LV) in Skin Health

Thank you so much for the good advice!!

Apr 1, 2016 · Treatment options for Lividoid Vasculopathy (LV) in Skin Health

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.

Marlene