Livedoid vasculopathy

Hi @linde,

The webpage for Santyl ointment (http://www.santyl.com) mentions, "Occasional slight temporary redness has been noted in surrounding tissue when applied outside the bone."
I'm also tagging @aimeenc @prairiesmoke @spence @grandmaabby @zenk @mlemieux @marlene64 @gonefishinmt to see if they have any thoughts about ankle ulcer and wound care.

I wouldn't dare use cortisone 10 anywhere near my ulcer. it is in a strong enough dosage to irritate the skin and it will thin the skin with repeated use. When the skin thins the ulcer is more likely to enlarge as it breaks down the fragile skin.  I was on a week cortisone compound for months but my skin thinned and ulcer got bigger.  the doctor warned me about the thinning.  I read the whole list of ingredients on anything I put on my skin before I buy anything and I look at the chemical structures of the ingredients.  I react to things and it may take hours or days for the reaction to show.  And I keep a list of preparations, medicines that I react to. Cortizone is a double edged sword,,,,, just depends on which edge you are dealing with. 

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!

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.

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!!

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.

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?

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?

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

@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