Treatment options for Livedoid Vasculopathy (LV)

Posted by zenk @zenk, Mar 19, 2014

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

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Hi @marlene64,

Please excuse the long delay, I’ve been swamped lately. To respond to your 2nd set of questions, I’ll do my best, but remember that these answers are from my own experiences and should only help to guide you to ask the right questions with your specialists.

1) The reason why I mention FactorV fights LV is due to the fact that FVL is a clotting disorder that needs anticoagulants to ensure clots aren’t being formed all the time. Now in the pages I attached, Low-Molecular Weight Heparin is administered to help LV. You don’t have to have a clotting disorder to receive the injections. I was on the injections for 2 years straight. In the end, it didn’t seem to help my ulcers and got increasingly harder and harder to find areas on my stomach and thighs to inject myself. This in itself doesn’t go against LV, but when your arteries are battered and bruised from clots like mine are, it gets increasingly difficult to get the needed oxygen from the blood to the wounds themselves. Oxygen = healing.

Bad blood flow and terrible blood pressure works against trying to heal the wounds. It’s because of my lack of oxygen to the wounds that I was given the opportunity to go into a Hyperbaric Chamber for two hours a day, for six weeks straight. Having pure oxygen pumped into my body was thought to potentially help heal my wounds (also found on the LV pages I uploaded), but again, nothing happened to help heal my wounds.

See one condition gives you clots and damages your arteries. The other condition swells your arteries and increases chances of blood seeping to the skin (eventually creating chronic ulcerative wounds). While it would seem that the two would work together, in my experience they don’t. Once you have open wounds, they are constantly fighting off infections due to the lack of nutrients needed from oxygen in the blood. Your immune system is constantly in overdrive. Unfortunately, I go on and off antibiotics more than I would like just to ensure my wounds don’t become so infected that they have to operate and/or potentially amputate.

I hope this clears the air a little. It’s a frightening thought I agree, but not all cases are the same with LV.

2) For me it started with a deep bluish/purple spot near my outer ankle on my left leg. I can’t remember if it started with vein like structures since I didn’t pay too much attention to it until it for over a year until started getting really soft to the touch and extremely sore. Once the skin layers underneath the top layer started breaking down, it felt almost like I could swish my skin around under the outer layer of skin. I always thought it was just a side effect of the blood thinners, boy was I wrong and so were my specialists who also thought the same thing.

Again, I would see a dermatologist and have a professional look at the area of skin. If there’s any small micro-wounds already present, they may take a biopsy which is highly recommended.

3) Yes, both my legs are affected, but a great deal differently. Since most of my clots have affected my left leg, I have 3x more chronic open wounds present. The right leg has two smaller wounds, one of which closed up since it was directly tied into an artery. Over time, both legs got really bad, but it took years before my right leg showed the effects. That was one of the hardest points in all of this, I always had one good leg and that changed as well.

Again, FVL & LV affects everyone differently. Please don’t take my experience as how it will happen (if it does at all) in your situation.

4) I have a love/hate relationship with Coumadin. I was on it for 12 years before I was able to switch to a different type of anticoagulant. Coumadin always made my arteries hurt, made me feel weakened and I would bruise a lot easier. And let’s not forget, the need to do your INR constantly, which for me, would never seem to normalize. I was constantly worried about falling, or having accidents that could make me bleed internally.

I recently asked to the switched back from Xarelto onto Coumadin to experiment and see if my wounds would change at all. So far (1.5 months now), no positive changes, only negative changes (which might be due to infections recently, it’s hard to say).

5) Contact the National Blood Clot Alliance (stoptheclot.org), I’m sure they have a list of hematologist in your area. Or alternatively, click the “make an appointment” button up top on the right hand side of this website. Most specialists don’t know about LV because it’s extremely rare. Only my dermatologist (who has 100’s of patients weekly) knew about LV, but he even had to look it up since throughout his career, he had only dealt with one other patient with LV.

6) That’s a good question. I’m not sure at all if they can diagnose LV without the progressive symptoms. Again, my specialists originally thought I had Rheumatoid Vasculitis, which was incorrect, but LV shows as being similar to other Vasculitis type conditions which makes it even harder to diagnose.

7) I’ve had leg pain for 20 years now Marlene. Having survived multiple clots in both legs, my arteries, muscle structures and nerves are never going to be the same. Clots force the walls of your arteries to expand, thus forcing other events to happen in the affected areas. Once you’ve had a clot, you never really recover 100%, there will always be damaged tissue and usually calcified clot remains.

I would speak to your doctor about the possibility of getting different pressure grade stockings. I used to wear compression stockings 24/7, only removing them to shower and/or to let my legs breathe from time to time. Unfortunately now, even if my wounds were to heal, there’s still extensive damage and I would have to wear compression stockings for the rest of my life, or otherwise suffer through the swelling and the pain.

I’m sure you’ll have more questions which is good. Write everything down, speak to your doctors, get advice from multiple specialists since therapies come from different departments. (ie. FVL = Hematologists, etc & Wound Care / LV = Dermatologists, etc.) Each condition needs to be treated from the appropriate specialist. Keep your own copy of your records so you can bring them with you whenever you see anyone.

Make sure to keep an accurate log of your medications, the effects or lack thereof. Keeping track over the years has helped me to be more informed about the decisions to try new therapies or not.

I hope this helps Marlene.

Take care, chat soon!
Martin R. Lemieux

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For the last five months i suffer from livedoid vasculopathy.I am on dipyridamole and acetylsalicylic acid treatment with no great improvement.Does anybody from the group know about any potential healing effects of electromagnetic fields?

Thank you very much for your time.

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Hi @patientrea. Welcome to Connect! I’ve moved your post over to this thread about treatment options for LV because we’ve had some good discussion here that I thought you would benefit from. I encourage you to read back through these posts. I’m also tagging, @mlemieux, @gonefishinmt and @marlene64 in hopes that they will welcome you and possibly be able to provide some insight into your question.

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@kelseydm

Hi @patientrea. Welcome to Connect! I’ve moved your post over to this thread about treatment options for LV because we’ve had some good discussion here that I thought you would benefit from. I encourage you to read back through these posts. I’m also tagging, @mlemieux, @gonefishinmt and @marlene64 in hopes that they will welcome you and possibly be able to provide some insight into your question.

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Hi @kelseydm.Many thanks for your fast answer!The discussion you mentioned is extremely useful and I hope that other people living with this strange disease will again join and help.One more question:Are there any possibilities of complete healing of the ulcers without reccurence;

Thanks again!!

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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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@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 @zenk many many thanks for your reply.My biopsy also speaks about LV.All suggestions and opinions in this blog are very useful and I will surely be in touch.I am very pleased to hear from you that no more ulcers.I wish to you and to all other people of this topic all the best!!

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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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@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 @marlene64,many thanks for your reply.I read with great interest your story above and I believe there will be good and encouraging news for you after your visit to the specialist.I do agrree with you that this site is very informative and helpful with kind people willing to help.I m really sorry for your night pains.Please keep us informed about any therapy you will be given.

Take care!

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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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Hi @patientrea @marlene64 @zenk

Nice to see you all discussing options for LV. There’s so few of us, it’s really nice to meet you all.

Just a small update, I haven’t been active too much lately, having some issues with a lot of pain and unfortunately, 3 new small ulcers just opened up on my left leg (two of the on top of my foot). Really angry about this new development, so I asked to be switched back to “Innohep” injections (low-molecular weight heparin), since historically my wounds are better when I take the injections…

But the downside is I tend to get massive bruising from injecting once a day on my lower stomach and upper thighs. It’s hard to explain to someone how hard it is to purposely give yourself more pain through daily injections.

Anyone else take Innohep or similar injections with success?
Anyone else get bruising and/or have tips to prevent bruising?

Someone suggested applying ice to the area minutes before injecting.

Cheers!
Martin R. Lemieux

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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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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

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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.

Jump to this post

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

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