Treatment options for Lividoid Vasculopathy (LV)

Posted by zenk @zenk, Mar 19, 2014

I am looking for outcomes in the use of blood thinners in the treatment of Lividoid Vasculopathy

@marlene64

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.

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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

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@zenk

Hi Patientria, I have had LV for 6 years now. I have been seen at a hospital wound healing center for most of those years. I was diagnosed with a biopsy with the definite diagnosis of LV. I only saw improvement in my healing after I started Xarelto 15 mg. once per day. My last open large foot ulcer was so bad that it was only able to heal with a skin graft of my own thigh skin. The skin graft and the Xarelto closed the wound and so far no more ulcers. As you read about LV you will see that it is a chronic vascular disease of the tiny vessels. Getting oxygen to the wound is primary.
that is what Xarelto helps to do. Keep in touch, Zenk

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Hi @prairiesmoke, @marlene64, @patientrea, @mlemieux, et al:

I just wanted to jump in on a couple of points: First, I wholeheartedly agree with Marlene about keeping up a positive attitude. I’ve said it before – in sports as in medicine, having a positive attitude is frequently the difference between winning and losing. Martin – I’m so sorry you are developing new ulcers, but you are wearing so many hats now and serving as Canada’s Ambassador for Thrombosis. You more than anyone I know have shown an amazing resilience in dealing with what is for you a very very long term disease. You are the poster child for LV. In that light, please don’t ever let yourself get down about this disease – too many people including me are looking up to you for inspiration. Hope you forgive me for that little rant, my friend. I know you are hurting like so many others in this group.

I wanted to respond to something @prairiesmoke brought up some time ago and then again recently – the notion that LV may have some genetic implications and/or may have some basis in being triggered by trauma. I also remember a relative – paternal grandfather – who had a severe case of what I now believe was LV. The symptoms I recall from many years ago were very similar to what I have experienced in the past few years. I know this is only anecdotal evidence, but I agree that it would be worth some research. The other aspect – whether LV can be triggered by trauma is a very intriguing question. I did see a scientific study a couple of years ago that suggested such a relationship, although I haven’t been able to locate it again. However, my dermatologist recently brought this notion up in one of our discussions, relating it to my particular history. I suffered a permanent nerve injury to my left femoral nerve resulting from a botched femoral nerve block for a knee replacement. Shortly after this, I began experiencing serious LV outbreaks where they had only been relatively minor previous to that and only appeared seasonally. Again, only anecdotal evidence, but I wish I could find that someone has done or is doing serious research along these lines. Anyone have any thoughts on this?

Thanks,
GEG
@gonefishinmt

Liked by patientrea

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@marlene64

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.

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I wonder if you would be able to try Xarelto in place of the injections of bloodthinner? Sure is a lot easier on you to take the pills.

Take care, Zenk

Liked by patientrea

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Hi,
My wife having livedoid vasculopathy desses and she is also pregnancy 2 month .please suggestion right madicion

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Welcome to Connect @jitin5. I’m glad you found this discussion about LV and members @gonefishinmt @mlemieux @prairiesmoke @marlene64 @patientrea @vickieb and @zenk.

What type of treatment is your wife getting to manage livedoid vasculopathy at the moment? It is important that your wife shares her pregnancy with her health care providers. They will recommend medications that are safe to take during pregnancy. Has she told her doctor that she is pregnant? And has she told her pre-natal care team that she has LV?

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@colleenyoung

Welcome to Connect @jitin5. I’m glad you found this discussion about LV and members @gonefishinmt @mlemieux @prairiesmoke @marlene64 @patientrea @vickieb and @zenk.

What type of treatment is your wife getting to manage livedoid vasculopathy at the moment? It is important that your wife shares her pregnancy with her health care providers. They will recommend medications that are safe to take during pregnancy. Has she told her doctor that she is pregnant? And has she told her pre-natal care team that she has LV?

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Thanks Colleen, and welcome jitin5. If you wish , tell us as much about your wife’s Lividoid Vasculopathy history as you are able. We will be able to determine if she was getting optimal care for this illness before she became pregnant and then you can discuss how pregnancy may or may not change her treatment with her doctor. Keep in touch , Zenk

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@zenk

Hi Patientria, I have had LV for 6 years now. I have been seen at a hospital wound healing center for most of those years. I was diagnosed with a biopsy with the definite diagnosis of LV. I only saw improvement in my healing after I started Xarelto 15 mg. once per day. My last open large foot ulcer was so bad that it was only able to heal with a skin graft of my own thigh skin. The skin graft and the Xarelto closed the wound and so far no more ulcers. As you read about LV you will see that it is a chronic vascular disease of the tiny vessels. Getting oxygen to the wound is primary.
that is what Xarelto helps to do. Keep in touch, Zenk

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Thank you Zenk.I’m gonna buy this medicine and try it. if it works then I will post on here.

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@zenk

Hi Patientria, I have had LV for 6 years now. I have been seen at a hospital wound healing center for most of those years. I was diagnosed with a biopsy with the definite diagnosis of LV. I only saw improvement in my healing after I started Xarelto 15 mg. once per day. My last open large foot ulcer was so bad that it was only able to heal with a skin graft of my own thigh skin. The skin graft and the Xarelto closed the wound and so far no more ulcers. As you read about LV you will see that it is a chronic vascular disease of the tiny vessels. Getting oxygen to the wound is primary.
that is what Xarelto helps to do. Keep in touch, Zenk

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Welcome to Connect, @wayneliu. We’re so glad that you’ve joined us, and even more so since you seem to have discovered some helpful suggestions shared by Connect member, @zenk.
This is what Mayo Clinic Connect is all about: meeting people with similar experiences, sharing your story, and learning from fellow members’ insights.
@wayneliu, please let us know if you have any questions or suggestions, and also whether Xarelto has worked for you.

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@zenk

Hi Patientria, I have had LV for 6 years now. I have been seen at a hospital wound healing center for most of those years. I was diagnosed with a biopsy with the definite diagnosis of LV. I only saw improvement in my healing after I started Xarelto 15 mg. once per day. My last open large foot ulcer was so bad that it was only able to heal with a skin graft of my own thigh skin. The skin graft and the Xarelto closed the wound and so far no more ulcers. As you read about LV you will see that it is a chronic vascular disease of the tiny vessels. Getting oxygen to the wound is primary.
that is what Xarelto helps to do. Keep in touch, Zenk

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Hi @kanaazpereira thank you so much for your help.I took Xarelto 15mg once a day only two days.I hope it works and by the way.I’ve joined an wechat(a Chinese social media app) group and there are 55 LVers in this group.I represent them to say if there is any medicine or any clinical trials which can treat our condition please let me know, thank you so much.

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