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
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
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!!
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.
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.
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.
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.
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.
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.
Hi @mlemieux,<br><br>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.<br><br>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.<br><br>Marlene
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
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?
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.
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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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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2 ReactionsHi @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!!
-
Like -
Helpful -
Hug
1 ReactionHi 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.
-
Like -
Helpful -
Hug
1 ReactionHi @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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Helpful -
Hug
1 ReactionHi @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
-
Like -
Helpful -
Hug
3 ReactionsHi @mlemieux,<br><br>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.<br><br>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.<br><br>Marlene
-
Like -
Helpful -
Hug
3 ReactionsHi @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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1 ReactionI 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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1 ReactionHi,
My wife having livedoid vasculopathy desses and she is also pregnancy 2 month .please suggestion right madicion
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?