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,
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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14 years ago I had my first vasculitis scare, had a bad rash on both legs then large wounds on my left leg and small wounds on the right leg.
It took three months on strong meds to heal up and the vasculitis went into remission.
The first of 2017 it started again, 6 months and I still have a deep wound on my left leg (nothing but a small rash on the right leg) I been on strong meds and wound care, it’s getting better but very slow. I’ve been told it’s Livedoid Vasculopathy or Vasculitis. It’s very painful and very rare and I’m very tired of having it. A doctor told me this is about the only type of vasculitis that’s painful, 14 years ago the large wounds had no pain but this time it’s very painful.

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@gtalan

14 years ago I had my first vasculitis scare, had a bad rash on both legs then large wounds on my left leg and small wounds on the right leg.
It took three months on strong meds to heal up and the vasculitis went into remission.
The first of 2017 it started again, 6 months and I still have a deep wound on my left leg (nothing but a small rash on the right leg) I been on strong meds and wound care, it’s getting better but very slow. I’ve been told it’s Livedoid Vasculopathy or Vasculitis. It’s very painful and very rare and I’m very tired of having it. A doctor told me this is about the only type of vasculitis that’s painful, 14 years ago the large wounds had no pain but this time it’s very painful.

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Hello @gtalen – Welcome to Mayo Connect. You have come to the right place to get some answers. There is an active discussion on livedoid vasculopathy on Mayo Connect here – http://mayocl.in/2tFTMbL. Can you share the type of medication you are taking? You might want to post your question in the discussion in the above link.

You may also wish to view this discussion about, “Treatment options for Lividoid Vasculopathy (LV)” here: http://mayocl.in/2kZ4s0k and this Mayo Clinic patient story: http://mayocl.in/1l54vIS

John

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@johnbishop

Hello @gtalen – Welcome to Mayo Connect. You have come to the right place to get some answers. There is an active discussion on livedoid vasculopathy on Mayo Connect here – http://mayocl.in/2tFTMbL. Can you share the type of medication you are taking? You might want to post your question in the discussion in the above link.

You may also wish to view this discussion about, “Treatment options for Lividoid Vasculopathy (LV)” here: http://mayocl.in/2kZ4s0k and this Mayo Clinic patient story: http://mayocl.in/1l54vIS

John

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Thank you John, I’m taking prednisone and about 4 different antibiotics over time (not all at the same time).
I also have Fibromyalgia and yes the pain from both is a little too much at times of flare ups.

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@gtalan

14 years ago I had my first vasculitis scare, had a bad rash on both legs then large wounds on my left leg and small wounds on the right leg.
It took three months on strong meds to heal up and the vasculitis went into remission.
The first of 2017 it started again, 6 months and I still have a deep wound on my left leg (nothing but a small rash on the right leg) I been on strong meds and wound care, it’s getting better but very slow. I’ve been told it’s Livedoid Vasculopathy or Vasculitis. It’s very painful and very rare and I’m very tired of having it. A doctor told me this is about the only type of vasculitis that’s painful, 14 years ago the large wounds had no pain but this time it’s very painful.

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Hola tengo 48 y el año pasado me diagnosticaron vasculitis cerebral. Pero tambien tengo HBP fibromialgia. Y estado Hipercoagulable. Es muy dificil para mi lidiar con tanto dolor.

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@shaydee

Hola tengo 48 y el año pasado me diagnosticaron vasculitis cerebral. Pero tambien tengo HBP fibromialgia. Y estado Hipercoagulable. Es muy dificil para mi lidiar con tanto dolor.

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¡Bienvenida a Connect @shaydee! Es muy difícil vivir con un diagnóstico de vasculitis cerebral y además HBP fibromialgia. La invitamos a compartir su experiencia en nuestro grupo de Mayo Clinic Connect en español. Esperamos que su comentario nos ayude para que otros miembros se animen a compartir su experiencia sobre esta enfermedad. Este es el enlace:
https://connect.mayoclinic.org/group/espanol/
Y también aquí le envío este enlace donde puede encontrar información sobre ensayos clínicos actuales relacionados con la vasculitis:
http://www.mayoclinic.org/es-es/diseases-conditions/vasculitis/care-at-mayo-clinic/clinical-trials/con-20026049
Nos gustaría saber un poco más sobre usted. ¿Podría compartir más detalles sobre lo que le han recomendado los doctores para ayudarle con su condición de salud?

Saludos, Gabriela.

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@shaydee

Hola tengo 48 y el año pasado me diagnosticaron vasculitis cerebral. Pero tambien tengo HBP fibromialgia. Y estado Hipercoagulable. Es muy dificil para mi lidiar con tanto dolor.

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Para mi es muy dificil pq tengo estado hipercoagulable. Y esto no me deja tomar cualquier meficamento. Ademas ya tuve un CVA y 5 DVT.

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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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