Treatment options for Livedoid Vasculopathy (LV)

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?

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.

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

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.

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.

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.

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 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