Livedoid vasculopathy

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.

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

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

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..

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?

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.

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

@gtalan prednisone is typically prescribed for cases with "vasculitis", not livedoid vasculopathy.

I learned this the hard way after being on an extreme dose for 2 years before someone realized the difference.

With LV, treatments helping; blood flood, oxygen and red blood cells are known therapies to look at. Key factors: quality wound care, compression (when needed), low impact exercises, vascular treatments & therapies and proper diet is important to encompass into your program.

Hope this helps!
Martin

I have widespread Lived Reticularis or vasculopathy whichever doctor I see< It was originally diagnosed by "GOOGLE SEARCH" by my Maine MD " that is what it looks like? I could not believe he did not sent me for a skin biopsy to see if it was Livedo Racemosa? I am al mottled but my face sometimes turns a pasty white my family said "death mask" The only lesions I have had are solitary scalp lesion that did heal for 9 years biopsy "necrotizing Folliculitis" with Staph aureus but the Derm had to finish removing sutures due to pus and pain that shot down inside my head just hustled me out the door " see a Rheum" My beta2 Glycolprotein was slightly increased he said take baby asa. I am tired of these doctors who do nothing but shove you the door and you have to care for the smelly infection your own. I had 2 primary care doctors in lady lake and Ocala and both needed up sending me to shrinks , I said I will go but all i am going to is complain about the shooty care I have been receiving with no body listening to me. The 1st shrink almost attacked me across from his desk when I mentioned that doctors should confer with other doctors that may have more knowledge as medicine is always evolving " How so you think we doctors are not trained well enough the medical field" I said that is not what I am saying , I am saying that if you do all these test and everything is negative , then why is bad to team up with others as they may know more knowledge" Then he put me down as a RN and I told I am no longer to work due to my misdiagnosed , botched surgeries in Maine but when I did work I always kept up with knowledge in which ever speciality I worked, like i would not give a drug I did not know what it was for and adverse reactions etc.. nor would I care for a diagnosis I was not familiar with as the hospital I worked had a good medical library and there were nurses more experienced in caring for whatever so I would knowledge myself. He threw me out and said " i do not want you seeing Dr Cai . I said I already made a change but that was no better as DR Fisher thought I diagnosed my self with MGUS,anemia, skin changes and he had all my records and each time I went to see him he would stand over me rather than sit as he usually did , and argue with me what Moffits told me and what he thought he read. I was right on both things but due to my crying due to my symptoms worsening like blood in urine " we took a urine sample 2 months ago and it was normal , so he sent me to a shrink DR McDonough in Tavaras 1 hour drive away. I got there and he said " I do see Hypochrondism here! I see a patient that is visibly ill and none is listening to her complaints" I said DR Fisher thought I was a hypochrondiac and he shook his head yes. He said I will need to see you 1 more time to conform and write my letter. I think doctors like that need to be reevaluated for competency, oh yes the scalp lesion that would never heal a Ocala primary to my surprise diagnosed me as a "PICKER" it is no wonder i get no where with anyone, only sicker and power quality life, I would not treat a animal like I have been treated and insulted by doctors. The solitary lesion was finally dx as SCC and removed the said got it all but within a month a new lesion started next to suture site and again like a crater like everything surrounding lesion is being eaten away, so I do not know what is going on as he mentioned Melanoma and Pre-SCC ?? Never heard of Pre SCC. I know here we go again with a sore scalp

Hi @mayoclinicforum,

I'm so sorry to hear about your mom's diagnosis; how is she doing?

We have some incredible discussions about LV here on Connect. I encourage you to read them here:
– 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 or Livedo Reticularis (whole body face white) https://connect.mayoclinic.org/discussion/livedo-vasculopathy-or-livedo-reticularis-whole-body-face-white/
– Surprise Diagnosis Spurs Learning Curve, Search for Help https://sharing.mayoclinic.org/2015/11/25/surprise-diagnosis-spurs-learning-curve-search-for-help/

May I ask, what type of treatment is your mother getting to manage the livedoid vasculopathy at the moment?