Livedoid vasculopathy group: Checking in, how are you doing?

Posted by zenk @zenk, Sep 19, 2019

Wonder if anyone still posts in the Lividoid vasculopathy group ?

I check the LV group page every now and then, but have nothing to report really. My last two ulcers are getting smaller and I'm anxious that I don't get any more. I debride them every 3 days and use acticoat. I'm still doing the – not eating anything on an allergy list – mostly, and if it helps then that's good. What are other people with LV doing ?

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Hi Ruth, I am so glad that you are doing better. So glad about no new ulcers. I am doing better too and have no new ulcers to report. I still take the Xarelto every day. I did experience some nerve damage from the skin graft I had to have placed almost a year ago to close my right ankle ulcer. My right foot has numbness and weakness . It was a terrible ulcer, and I guess I am glad to still have my foot. I have forgotten now, what medications you are taking.
Thanks for posting, Zenk

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@ruthnz

I check the LV group page every now and then, but have nothing to report really. My last two ulcers are getting smaller and I'm anxious that I don't get any more. I debride them every 3 days and use acticoat. I'm still doing the – not eating anything on an allergy list – mostly, and if it helps then that's good. What are other people with LV doing ?

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Hello my fellow sufferers! I'm Curtis Miller, I've been dealing with my LV since November 2011 but wasn't correctly diagnosed until it showed up on my other ankle! That was April 2015! My right ankle healed in 2017 thanks to a NP at the Paradise Valley Hospital center for Wound Healing. She kept trying new meds to find something that would work and it seemed like going back and forth from Silver Alginate and Anasept gel and bandage changes daily with debridment once a week has it nearly healed. Before she started working on my feet I kept being told I should let them cut off my foot! And even after it started healing one Dr said it will never be the same as it was and I should cut it off anyway! My right ankle is discolored and has a few scars and my left is healed except for 2- 1/4 to 1/2 inch spots that are very shallow compared to the gaping holes I had that were 4mm deep on average with some spots deeper. I'll try to remember to take pictures of what it looks like, can I post them here? Nurse Kelly Knight and her crew at the wound center have me walking correctly again and I only go see them every 2 weeks now and I'm looking for a Jeep to go camping again! That's it, except does anyone else still get the various pains in their healed ankles/feet? OK, Happy Trails!

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@zenk

Hi Ruth, I am so glad that you are doing better. So glad about no new ulcers. I am doing better too and have no new ulcers to report. I still take the Xarelto every day. I did experience some nerve damage from the skin graft I had to have placed almost a year ago to close my right ankle ulcer. My right foot has numbness and weakness . It was a terrible ulcer, and I guess I am glad to still have my foot. I have forgotten now, what medications you are taking.
Thanks for posting, Zenk

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I take Pantoprazole at 3pm and 3x 100mg Aspirin Ph Eur (enteric coated) in the middle of my evening meal. I tried Xarelto but I had nose bleeds. I use Microdacyn Wound Care to clean the ulcer/ulcerated area around the leg. I use Acticoat Flex 3 (nanocrystalline silver) which I change every three days, cover with gauze squares and then pull on a "blue line tubular bandage" to hold it all in place. I try and get air and light to the other part of the leg. I found using sticking plaster even the allergy kind, or a bandage did damage to the area, so now I just use enough stocking to hold the things in place. Earlier I also used "Iodosorb" an iodine ointment on the holes, alternating with acticoat.
I've had another autoimmune skin problem, diagnosed 2002, and control that through diet, which is why I'm having a go at the full allergy list whammy. I know food makes a difference.

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@curtismiller

Hello my fellow sufferers! I'm Curtis Miller, I've been dealing with my LV since November 2011 but wasn't correctly diagnosed until it showed up on my other ankle! That was April 2015! My right ankle healed in 2017 thanks to a NP at the Paradise Valley Hospital center for Wound Healing. She kept trying new meds to find something that would work and it seemed like going back and forth from Silver Alginate and Anasept gel and bandage changes daily with debridment once a week has it nearly healed. Before she started working on my feet I kept being told I should let them cut off my foot! And even after it started healing one Dr said it will never be the same as it was and I should cut it off anyway! My right ankle is discolored and has a few scars and my left is healed except for 2- 1/4 to 1/2 inch spots that are very shallow compared to the gaping holes I had that were 4mm deep on average with some spots deeper. I'll try to remember to take pictures of what it looks like, can I post them here? Nurse Kelly Knight and her crew at the wound center have me walking correctly again and I only go see them every 2 weeks now and I'm looking for a Jeep to go camping again! That's it, except does anyone else still get the various pains in their healed ankles/feet? OK, Happy Trails!

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Curtis, I had a ulcer on the top of the arch of my left foot. That's where they did the biopsy. It healed then came back, and has now healed for some time BUT it often hurts and is sensitive and I can feel it down to the end of my big toe, like a tightened rod. I worry that it's going to return as a hole. 🙁 I only had one on each foot, others were on the lower legs. The other ulcers I had to start with have healed. So glad you didn't have your foot cut off and that you are walking correctly again.

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@ruthnz

Curtis, I had a ulcer on the top of the arch of my left foot. That's where they did the biopsy. It healed then came back, and has now healed for some time BUT it often hurts and is sensitive and I can feel it down to the end of my big toe, like a tightened rod. I worry that it's going to return as a hole. 🙁 I only had one on each foot, others were on the lower legs. The other ulcers I had to start with have healed. So glad you didn't have your foot cut off and that you are walking correctly again.

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Hi, I'm guessing your name is Ruth! Where are you located? I'm just curious, I'm in Chula Vista, CA. My original wound was on the inside of my left ankle and started as just about the size of a quarter but quickly got out of control! Mostly from Dr's not knowing what it was and trying to treat it like a blister. I went through 6 doctors before one said You've got to go to the hospital and have a wound specialist check you out! By then it was so bad they kept me in the hospital for 5 days, pumping antibiotics into me.Then the wound Dr would scrape out everything that was growing, stuck me on xeralto and gave me bad info on what was wrong with my ankle. Then I went to another hospital wound center and then a 3rd where suddenly there was big concerns because the original was about 3 inches wide and at the edge of my tendon in back of my foot and another was growing on the outside of my ankle and the one on my right foot that started about the size of a dime and grew to larger than a silver dollar before they got it under control. Now I have one spot on the outside of left ankle and a match on the inside of left ankle. How many different pains did you experience? I can count 5 different and I don't take pain meds, they make me stupid during and after. Do you know of any way to get recognition to the crew that saved my feet? I'd buy them all something special but I'm pretty poor with my monthly $1055. barely enough for living and saving a few bucks! If you think of a way can you let me know? Thanks for letting me vent! since I don't work and spend 95% of my day in bed with legs up I don't see or meet anyone. Have a good weekend, I'm going to walk 4 blocks today to continue to stretch my skin back to normal walking. I forgot to take pictures this morning when I changed bandages, I'll write myself a note.
Curtis

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Hi Curtis, I suddenly got lots of red lumps I thought were mossie bites in January. Then they turned black and into holes that got bigger. At first I treated them with Medical honey then realised it was totally out of control so I went to the Dr within 2 weeks of it starting. In New Zealand we have a District Nurse scheme where the DN will come to your home if you can't get to the Outpatient Clinic at the Hospital. As I was mobile and able to drive I went to the clinic everyday for a month where they debrided and dressed the holes, using lidocain to numb the holes, and then I changed to using Emla which is a stronger numbing cream. So I'd clean what I could at home and put the emla on so that by the time I got to the DN Clinic it was an hour later and they could debride them properly. Within 2 weeks I had an apt with Dermatology who did the biopsy. 9 blood tests and xx swabs plus the biopsy – decided LV. The Dermatologist had seen one other case in Australia and recognised what was going on. So I've had monthly checkups with the dermatologist and daily trips to the DN in Jan/Feb, then the DN every two days in Mar/Apr and since end of April every three days.
The pain at night was unbearable with raised legs. The DN suggested keeping legs level. She said legs with artery problem shouldn't be raised – causes the pain. Legs with vein issues need to be raised. So maybe get a second opinion about raised legs. LV is a platelet problem. From what I understand the platelet shell hardens which prevents them from passing each other in the blood, so they clump together and thrombose to the skin surface and create mayhem !! as we know.
I googled and found this Mayo group and another called Team Inspire –
https://www.inspire.com/search/?group_id=200136&sec=all&query=livedoid+vasculopathy and read every email there was to get some ideas and find what other people were doing.
As I said to Zenk, I've also changed my diet and don't eat foods that people can be allergic to.
Good luck with your walking. We have to try and find what works for us, everyone is different.

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@zenk, thanks for getting the LV group going again and checking in on members. I'm tagging past members, like @gtalan @patientrea @linde @mlemieux @spence to bring them into this discussion.

Past, present and new members might appreciate an inventory of the livedoid vasculopathy discussions here on Connect. There's so much incredible information shared in these conversations:
– Livedoid vasculopathy https://connect.mayoclinic.org/discussion/livedoid-vasculopathy/
– Treatment options for Lividoid Vasculopathy (LV) https://connect.mayoclinic.org/discussion/i-am-looking-for-outcomes-in-the-use-of-blood-thinners-in/
– Livedoid vasculopathy and thrombocytosis: related? https://connect.mayoclinic.org/discussion/livedoid-vasculopathy-1/
– LIvedo Vasculopathy or Livedo Reticularis (whole body face white) http://mayocl.in/2qoA4jr

@zenk – how are you doing?

@ruthnz – did a doctor suggest you try this new diet? Do you mind sharing more about the foods you are avoiding?

@curtismiller – how was your walk yesterday? How is your pain today?

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@curtismiller

Hello my fellow sufferers! I'm Curtis Miller, I've been dealing with my LV since November 2011 but wasn't correctly diagnosed until it showed up on my other ankle! That was April 2015! My right ankle healed in 2017 thanks to a NP at the Paradise Valley Hospital center for Wound Healing. She kept trying new meds to find something that would work and it seemed like going back and forth from Silver Alginate and Anasept gel and bandage changes daily with debridment once a week has it nearly healed. Before she started working on my feet I kept being told I should let them cut off my foot! And even after it started healing one Dr said it will never be the same as it was and I should cut it off anyway! My right ankle is discolored and has a few scars and my left is healed except for 2- 1/4 to 1/2 inch spots that are very shallow compared to the gaping holes I had that were 4mm deep on average with some spots deeper. I'll try to remember to take pictures of what it looks like, can I post them here? Nurse Kelly Knight and her crew at the wound center have me walking correctly again and I only go see them every 2 weeks now and I'm looking for a Jeep to go camping again! That's it, except does anyone else still get the various pains in their healed ankles/feet? OK, Happy Trails!

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Hi Curtis, So glad you are doing better . Do you take Xarelto to prevent new ulcers? I had three ulcers over the last 10 years that were as deep as you describe yours. My plastic surgeon did skin grafts on them all which allowed the wounds to heal. LV is a chronic disease as you know, so it sounds like you have found a good team to help you. Zenk

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@ethanmcconkey

@zenk, thanks for getting the LV group going again and checking in on members. I'm tagging past members, like @gtalan @patientrea @linde @mlemieux @spence to bring them into this discussion.

Past, present and new members might appreciate an inventory of the livedoid vasculopathy discussions here on Connect. There's so much incredible information shared in these conversations:
– Livedoid vasculopathy https://connect.mayoclinic.org/discussion/livedoid-vasculopathy/
– Treatment options for Lividoid Vasculopathy (LV) https://connect.mayoclinic.org/discussion/i-am-looking-for-outcomes-in-the-use-of-blood-thinners-in/
– Livedoid vasculopathy and thrombocytosis: related? https://connect.mayoclinic.org/discussion/livedoid-vasculopathy-1/
– LIvedo Vasculopathy or Livedo Reticularis (whole body face white) http://mayocl.in/2qoA4jr

@zenk – how are you doing?

@ruthnz – did a doctor suggest you try this new diet? Do you mind sharing more about the foods you are avoiding?

@curtismiller – how was your walk yesterday? How is your pain today?

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Hello, my leg is slightly swollen but it feels okay and has not sprung a leak as it has done in the past when I would flex it too much and rip the skin. I remembered a discussion I had with a research doctor about a new drug. I've copied it and I'm pasting the whole thing here, I hope this can help someone!

From Robert Levy
Jun 17, 2019, 9:25 AM
to me
Mr. Miller;
Thank you for your inquiry regarding Vasculera.
Neither Vasculera nor its primary ingredient, diosmin, has been studied in people with your condition. Although diosmin has been used in Europe as a drug for venous insufficiency and all its complications, including venous ulcers, for 40 years it has never been systematically studied for arterial diseases. That said, Primus has received numerous anecdotal reports of benefit in people with ulcers due to arterial diseases though the doses used have generally been one twice/day and the time to benefit generally at least 2 months.
I cannot say with certainty if Vasculera will help your condition but it might be worth a try for a couple of months. This would be what is called an “off label” use since we market the product only for venous disease. As such, you should discuss the use of Vasculera for this purpose with your health care provider. If you opt to do this after consultation with your health care provider, I would greatly appreciate learning of your experience.
Regards,
Robert M Levy, MD
Director of Clinical Development
Primus Pharmaceuticals, Inc.

Please check this stuff out. When I was first labeled as disabled I thought it was great! lay around and get paid not to work. After 6 months the blessing was turning sour and since then I think I've researched and contacted more doctors and science geeks than I thought existed, I hope others are doing the same thing, because this stuff, Vasculera, might be the miracle drug for someone stuck with our ailment!
One quick question, is LV a disease, ailment, affliction? Different Dr's use different terms, what is it??
Thanks again,
Curtis Miller, slightly less depressed in sunny California

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