Livedoid vasculopathy

Hi @mayoclinicforum ,

Sugar and salt are your enemy.

Sugar is known to be linked to hypotension, causing low blood pressure.
https://www.mayoclinic.org/diseases-conditions/low-blood-pressure/symptoms-causes/syc-20355465
Salt also restricts the arteries big time!

Why does this matter? Blood flow increases healing, it delivers the oxygen and nutrients needed to speed up your wound care healing process.

Hope this helps!
Martin

Hi, I have Livedoid Vasculopathy. Diagnosed in March 2017 but have been getting treatments and misdiagnosed since Nov. 2011. What is the latest guess about the proper way to treat and/or cure it? I'm to the point that I'm considering having my foot amputated.

Hello @curtismiller,

I'm sorry to hear about your struggles, and so glad you've reached out to the Connect community. I'd like to start by sharing this Mayo Clinic Patient story, "Surprise Diagnosis Spurs Learning Curve, Search for Help" https://sharing.mayoclinic.org/2015/11/25/surprise-diagnosis-spurs-learning-curve-search-for-help/ which you may wish to read.

I’d also like to invite @wayneliu @zenk @patientrea @marlene64 @gonefishinmt @mlemieux @prairiesmoke @ceejay @vickieb @gtalan, and other members to share their insights Livedoid Vasculopathy (LV).

There are a couple of other active discussions that you might also like to read:
– Treatment options for Lividoid Vasculopathy (LV) https://connect.mayoclinic.org/discussion/i-am-looking-for-outcomes-in-the-use-of-blood-thinners-in/
– Chronic Wound Care - What Products do YOU Use? https://connect.mayoclinic.org/discussion/chronic-wound-care-what-products-do-you-use/
– Livedoid vasculopathy and thrombocytosis: related? https://connect.mayoclinic.org/discussion/livedoid-vasculopathy-1/

@curtismiller, I realize how stressful this must be and that you're doing all that you can. We're here to help. May I ask if you would share more details about the treatments you have tried?

Omg... thats exactly what my leg looks like. I have given up being a guine pig? The only thing I take now is xeralto, an pain meds. None of the meds I've tried did anything,except make me sick. Most days I cant walk..

Same same!!! I eat percocet like its candy sometimes. Dr gave me gabapentin for the nerve pain i now get

Hello all-
I'm part of your community also, unfortunately for us all. I was diagnosed with LV quite awhile ago, I'm thinking 9 years. It appears that everything is calm now, but I've definitely had long stretches of open wounds, chronic pain, and sleepless nights. Terrible stuff, for sure. The latest treatment recipe has been:
Dipyridamole (Persantine) 50mg 2x/day
Aspirin 325mg 1/day
Pentoxifyline 400mg 2x/day
Nifedipine 10mg 3x/day

I've also used topicals like Mupirocin ointment and Clobesterol propionate ointment.
I used Gabapentine for about a month, and it helped me sleep.
I've also been taking either a B-complex or niacinamide daily, covering the open wounds with large bandages, and wear compression socks (usually). Meditation is helpful also. The Headspace app actually has a series of guided meditations for chronic pain.
Enough for now. There have been other things that haven't really worked, but I guess that finding out what works for you individually is all part of the process.
Best of luck to you all. LV is rare and I personally do not know anyone else with it, but I do take some comfort that there are others out there, even though I wish none of us had to deal with this.
Take care. Stay positive!
John

Hello @mclaughjg,

Welcome to Connect, and thank you so much for sharing – I know that members in this group will sincerely appreciate your insights and suggestions. I've heard much about Headspace, the meditation app; another one to try is Calm, which is simpler to use, but has some great techniques.

You mentioned, "There have been other things that haven’t really worked..." Would you be willing to share what those are, @mclaughjg? I'm also curious to learn in what way does taking B-complex help? We look forward to getting to know you.

Have any of you tried methotrexate? Which is a form of chemotherapy.

Hi Tina, What treatments are you on now? The research I have read for Lividoid Vasculopathy and Methotrexate is that Methotrexate is not helpful in LV because Methotrexate is a drug used for inflammation . LV is a vascular disease . That is not to say that it would not help you. I took Metho many years ago for primary sjogrens syndrome and it worked like a charm , because Sjogrens is an inflammatory illness. I took chemo for breast cancrer in 2012 and was in terrible misery with skin peeling on my feet. No chemo for me. Zenk

HinZenk, Right now only Xeralto, due to a dvt in 2015. I have tried all the usual meds, but nothing helped. Went to a new derm doctor an they gave me a months worth of prednisone, due to havi g vasculitis... I've had LV for almost 13 yrs now., but this is the worst it has ever been. It has now moved down my calves, to my ankles an feet.. Have nerve pain, so take gabapentin when needed. I`m just so tired of not being able to walk and enjoy my life.. willing to try all the meds again, an pray for relief. Tina