Livedoid vasculopathy

Posted by angelasmom @angelasmom, Aug 3, 2011

Looking for people with the rare blood clot and leg and foot ulcer disease of Livedoid Vasculopathy. Mayo seems to be experienced at treating this disease so I thought I would find you here, I have it.

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

@ruthnz

My Dermo yesterday changed my meds from 300 mg Aspirin a day to Xarelto. I hope it makes a difference. I am also doing a full AIP Auto Immune Protocol food regime to try and knock this thing on the head

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Hi Ruth, So good you are trying Xarelto. What is the status of your Ulcer right now? Would love to hear how things go and also more about the autoimmune Protocol food regime. Zenk

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Hello everyone!
I have been struggling with LV since 2011. I have active ulcers since May last year and no cure is helping. I became resistant to Xarelto and to Fraxiparin injections. Since 10 days ago I have started taking tablets Sildena (which is known as Viagra) because I have read it in an article that it helped heal LV ulcers successfully, so I told my Dr and he decided I try this. Started with a small dose 12,5 mg 2 x day and now increased to 25 mg 2 x day but seems it's not going to help for me because I notice new ulcers coming up every day! So am thinking now to undergo for Hyperbaric Oxygen therapies.
Has anyone of you tried HBO therapy? Has it worked for any of you? Looking forward to hearing from your experiences.
Stay healthy 🙂
Eva

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@zenk

Hi Ruth, So good you are trying Xarelto. What is the status of your Ulcer right now? Would love to hear how things go and also more about the autoimmune Protocol food regime. Zenk

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MY LV started in Jan 2019 and I know many of you have been dealing with this for many years, sadly. i have one stubborn ulcer hole left on the top of my left foot above the arch. My right leg also has a stubborn ulcer hole on the outside edge of the foot. One of the original big ulcers is very slowly improving, BUT I got a new shallow ulcer above it where the skin just sloughed off and two other similar areas nearby that might be from the paper tape, or not, not forgetting the new spot hole on the back of the right leg calf. In January when it started I had 12, so am now down to 5.
I already had one AID and since 2002 haven't eaten gluten, sugar and deadly nightshades. When I eat those the skin flares into itch/burn/splits so at Christmas, Easter and other festive times when the temptation is too great !!!!.
Anyway now I have also cut out legumes, dairy, eggs, alcohol. For some years I haven't used any chemical product on my skin or hair, I use perfume free laundry product, good olive oil only, and hypo-allergenic toilet paper.
There are two good books on AID protocol which I am sort of following as best i can.
The Autoimmune Solution by Amy Myers
healing Autoimmune Disease by Sandra Cabot

REPLY
@eva75

Hello everyone!
I have been struggling with LV since 2011. I have active ulcers since May last year and no cure is helping. I became resistant to Xarelto and to Fraxiparin injections. Since 10 days ago I have started taking tablets Sildena (which is known as Viagra) because I have read it in an article that it helped heal LV ulcers successfully, so I told my Dr and he decided I try this. Started with a small dose 12,5 mg 2 x day and now increased to 25 mg 2 x day but seems it's not going to help for me because I notice new ulcers coming up every day! So am thinking now to undergo for Hyperbaric Oxygen therapies.
Has anyone of you tried HBO therapy? Has it worked for any of you? Looking forward to hearing from your experiences.
Stay healthy 🙂
Eva

Jump to this post

Hi Eva, I had HBO treatments in 2010 and 2018 for my LV . The treatnments were very helpful in healing very severe open ulcers. Due to the fact that Medicare does not pay for HBO for LV patients unless you are diabetic I could not afford to continue. HBO is a very good treatment for LV. It is one of the best ways to get oxygenated blood to the wound. I hope you can try it. Zenk

REPLY
@ruthnz

MY LV started in Jan 2019 and I know many of you have been dealing with this for many years, sadly. i have one stubborn ulcer hole left on the top of my left foot above the arch. My right leg also has a stubborn ulcer hole on the outside edge of the foot. One of the original big ulcers is very slowly improving, BUT I got a new shallow ulcer above it where the skin just sloughed off and two other similar areas nearby that might be from the paper tape, or not, not forgetting the new spot hole on the back of the right leg calf. In January when it started I had 12, so am now down to 5.
I already had one AID and since 2002 haven't eaten gluten, sugar and deadly nightshades. When I eat those the skin flares into itch/burn/splits so at Christmas, Easter and other festive times when the temptation is too great !!!!.
Anyway now I have also cut out legumes, dairy, eggs, alcohol. For some years I haven't used any chemical product on my skin or hair, I use perfume free laundry product, good olive oil only, and hypo-allergenic toilet paper.
There are two good books on AID protocol which I am sort of following as best i can.
The Autoimmune Solution by Amy Myers
healing Autoimmune Disease by Sandra Cabot

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Thanks for the info on Autoimmune solutions. Will take a look. Good Luck, Zenk

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Hi everybody! I just heard about a new drug that I'm going to ask the people at the wound center about. It's called Vasculera-diosmiplex 630mg and from what I've read it could be the light at the end of an 8 year long tunnel! Do your own research, don't go by what I think or say but I'm hopeful that it will Finally cure me.

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@curtismiller

Hi everybody! I just heard about a new drug that I'm going to ask the people at the wound center about. It's called Vasculera-diosmiplex 630mg and from what I've read it could be the light at the end of an 8 year long tunnel! Do your own research, don't go by what I think or say but I'm hopeful that it will Finally cure me.

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Please let us know how this works for you. Good Luck, Zenk

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@zenk

Hi Eva, I had HBO treatments in 2010 and 2018 for my LV . The treatnments were very helpful in healing very severe open ulcers. Due to the fact that Medicare does not pay for HBO for LV patients unless you are diabetic I could not afford to continue. HBO is a very good treatment for LV. It is one of the best ways to get oxygenated blood to the wound. I hope you can try it. Zenk

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Hello Zenk,
Thank you for your replay. I appreciate your prompt replies always. I started with HBO treatment and had 5 treatments until now but don't feel/see any changes yet. My right ankle is still swelling and the ulcers are still the same. I am planning to take at least 20 sittings in the HBO for 1 hour. And am taking 1 xarelto of 20mg daily.
Can you recall how many HBO sittings did you have and after which one did you feel any better?
Thank you and regards,
Eva

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@angelasmom

Hi Spence I take it you have Livedoid Vasculopathy/Vasculitis? Do you
recall the name of the disorder your Dr was testing for or the name of the
test? Thank you.

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I'm wondering if this thread or another is still active. I've been checking on Mayo sites, but have found nothing. Thank you.

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@ruthnz

My Dermo yesterday changed my meds from 300 mg Aspirin a day to Xarelto. I hope it makes a difference. I am also doing a full AIP Auto Immune Protocol food regime to try and knock this thing on the head

Jump to this post

I had to change back to Aspirin within a day. The Xarelto made my nose bleed

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