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

Interested in more discussions like this? Go to the Skin Health group.

@fitchick40

If I'm in the wrong group please direct me to the right group. Is Vasculitis an autoimmune disease? My RBC, WBC and Immature granules are too high. The ANA is negative. I get a rash on my left side under my spleen. It goes away on it's own but has come back several times. Before the negative ANA my doctor was convinced I had Vasculitis and wants a biopsy. I don't want to do one unless I really have this. Waiting to hear from doctor.

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Hi @fitchick40, There is another discussion with the same name in the Autoimmune group. I'm tagging our moderator @ethanmcconkey to see if we can move your post to the following discussion to combine the two discussions.

> Groups > Autoimmune Diseases > Vasculitis
https://connect.mayoclinic.org/discussion/vasculitis/

There is also an active discussion on the ANA test results here that you may want to join and post your question.

> Groups > Autoimmune Diseases > What can cause ANA titre of 1:2560?
https://connect.mayoclinic.org/discussion/what-can-cause-ana-titre-of-12560/

Have you had any other tests done to determine if you have vasculitis? Mayo Clinic has some information that may be helpful here:

Vasculitis – Diagnosis & Treatment: https://www.mayoclinic.org/diseases-conditions/vasculitis/diagnosis-treatment/drc-20363485

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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.

Jump to this post

If I'm in the wrong group please direct me to the right group. Is Vasculitis an autoimmune disease? My RBC, WBC and Immature granules are too high. The ANA is negative. I get a rash on my left side under my spleen. It goes away on it's own but has come back several times. Before the negative ANA my doctor was convinced I had Vasculitis and wants a biopsy. I don't want to do one unless I really have this. Waiting to hear from doctor.

REPLY
@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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Hi @fitchick40 you may have noticed I moved your post to this existing discussion on Vasculitis as @johnbishop suggested so that you can connect with others who have similar experiences. Simply click VIEW AND REPLY in your email notification to get to your post.

@fitchick40 is the rash your only symptom at this time or do you have others?

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Just hoping to help someone looking this up. I have had this now for 5 to 6 years, and the only real help I get is by keeping my feet up very high and I mean like 2 and a half to 3 feet over my heart very uncomfortable but you should be able to feel the blood flow change and literally the pain seaping out of your legs. The only problem you will start to have is first your hips get hurting very bad but still not as bad as the pain in your legs. And then a big problem is even when you do feel like you can walk because pain in your legs subsided your hips will feel like they suddenly give out and leave you stuck until you sit for a while. Compression socks help for short term use feel much better and you can walk much more distances but after a couple of days be careful because the swelling will go wherever the socks end. First thing I did was get longer socks up to the knee. And then started swelling there and then I got like pantyhose compression socks that went up my whole leg gut then started swelling in genatal area and got hemroids bad and I had never had them. So socks were out. Now has been years and I learned to keep my feet up about the same time I walk. So if I want to stand or walk for 2 hours then I stop and lay with my feet up for 2 hours and this has kept me from having open wounds since it has started. I still have pain every day but not as bad as with the open wounds any questions or need someone to talk to, send me a private message or post a reply. Good luck. Brian

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@busyboy

Just hoping to help someone looking this up. I have had this now for 5 to 6 years, and the only real help I get is by keeping my feet up very high and I mean like 2 and a half to 3 feet over my heart very uncomfortable but you should be able to feel the blood flow change and literally the pain seaping out of your legs. The only problem you will start to have is first your hips get hurting very bad but still not as bad as the pain in your legs. And then a big problem is even when you do feel like you can walk because pain in your legs subsided your hips will feel like they suddenly give out and leave you stuck until you sit for a while. Compression socks help for short term use feel much better and you can walk much more distances but after a couple of days be careful because the swelling will go wherever the socks end. First thing I did was get longer socks up to the knee. And then started swelling there and then I got like pantyhose compression socks that went up my whole leg gut then started swelling in genatal area and got hemroids bad and I had never had them. So socks were out. Now has been years and I learned to keep my feet up about the same time I walk. So if I want to stand or walk for 2 hours then I stop and lay with my feet up for 2 hours and this has kept me from having open wounds since it has started. I still have pain every day but not as bad as with the open wounds any questions or need someone to talk to, send me a private message or post a reply. Good luck. Brian

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Hi Brian, welcome. I'm sure your tips will be welcome by members like @prairiesmoke @marlene64 @patientrea @vickieb and @zenk, and to future members.

While taking time to have your feet up above your heart, what activities are you able to do? You measure the time walking vs sitting with feet above the heart. Do you also calculate the time spent on your feet for other activities, ie washing dishes, gardening etc.?

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