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 group.

@linde

Being new to LV I have a simple question. I have an ulcer on my ankle for about 7 months now. It seems to be finally closing but around it the skin is all red and bumpy and around that it is so-o itchy. I do use Santyl on the ulcer and have tried honey around it and sometimes cortisone 10. Does anyone with more experience have any other suggestions? Thank you.

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Hi @linde,courage!!!Has your doctor tried some other form of therapy,for example blood thinners,like Xarelto;Of course these medications if prescribed to you by your doctor should be given only in close cooperation with him!

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Thank you for your responses. I only use Santyl sparingly right on the ulcer and change twice a day. Because of the thinning I also only use the cortizone when so itchy I need help. I take a full dose aspirin and anagrelide to reduce platelets. I am not sure how Xarelto exactly works to help. One of my Dr’s has mentioned it.

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@linde

Thank you for your responses. I only use Santyl sparingly right on the ulcer and change twice a day. Because of the thinning I also only use the cortizone when so itchy I need help. I take a full dose aspirin and anagrelide to reduce platelets. I am not sure how Xarelto exactly works to help. One of my Dr’s has mentioned it.

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Hi @linde,Xarelto in simple words is a thrombosis inhibitor.As far as I know it doesn’t reduce platelets.Your doctors know better than me and will surely do the best for you!Be in touch!!

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Hi @angelasmom thank you for starting this thread. My mom has recently been diagnosed with LV. I’m devastated that there is no cure, hopefully she will do well managing it.

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@mayoclinicforum

Hi @angelasmom thank you for starting this thread. My mom has recently been diagnosed with LV. I’m devastated that there is no cure, hopefully she will do well managing it.

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By the way, the doctor told her to minimize her sugar and salt intake. Does anyone know if salt and sugar intake is related to LV?

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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?

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@angelasmom

Hi Alejandro Thanks for replying. Where is Dr. Hare and the wound care center? Would you recommend them to other LVers? Do you know anyone else with LV? You know I had skin grafts too! When my LV had slowed down I had not had new wounds for a year but 2 little ones were just hanging on refusing to close for 16 months Dr. Phillips at the Boston Medical Center put Apligrafts on me. lab grown skin made of stem cells. No problems since!. I found my cause of LV was cryoglobulinemia. That’s when a blood antibody that only separates out of the blood in cold weather,cryoglobulin, causes clots. It’s not that LV has no known cause. It has multiple contributing causes sometimes different for different people. If you are interested I will try to post a article listing the many possible causes. Some have been able to find their contributing factors and helped control LV. Article is also posted on Inspire.com under “Causes of Livedoid Vasculopathy. Angelasmom

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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

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@patientrea

Hi @gtalan can you please tell us about any other medications you have used to treat this disease;Please try to be optimistic!

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@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

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@mayoclinicforum

Hi @angelasmom thank you for starting this thread. My mom has recently been diagnosed with LV. I’m devastated that there is no cure, hopefully she will do well managing it.

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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

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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.

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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?

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@srusti

@kanaazpereira thanks for the reply this is here condition right now
This is her latest prescription but not much different form old prescription
Mycophenolate tablet twice a day 2 tablets at 1 time
Feronia_xt one tab once a day
Neuronorm one tab once a day
Methylprednisolone (medrol) tablets once day

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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..

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