Livedoid vasculopathy

Hi @eva75,thanks for your reply!

This is my third year suffering from horrible ulcers. Initially, after my physician finally acknowledging that I was in excruciating pain and seeing the ulcer ruptured, he referred me to a dermatologist. They took a biopsy as well as tons of bloodwork, in which all the “serious” probable causes were eliminated. At that time , the dermatologist felt I had drug induced vasculitis as I was on 2 potential culprits. Out of desperation, even though I’ve been diagnosed with PTSD, I weaned off the meds with help of my doctor. The ulcers subsided. Until the following spring. I noticed my flare ups and ulceration occurs in late spring and lasts until the end of fall. The cycle begins....I was then referred to a dermatologist who’s highly reputable who explained that my ulcers do not match drug induced Vasculitis, but instead it’s Livedoid Vascupathy.
He prescribed me Pentofloxin as well as aspirin daily. The pentofloxen made my heart beat so hard it felt like it would come through my chest as well as shaking. Pretty much like a panic attack times 1000. The aspirin caused thrush in my throat that I thought I kept getting strep throat from the pain and appearance of my throat. Long story longer , lol, I cannot take any type of oral medication due to such a high sensitivity level. My dermatologist decided to start giving me Kenolog injections monthly directly into each ulcer. First round I felt like I hit the jackpot. Then the flare ups went into overload. The pictures I attached are from yesterday. I’m beyond exhausted and feeling defeated. I’ve put on a lot of weight because I can’t even walk properly without shuffling my feet otherwise I feel like my skin will tear open. I use Cetaphil as a wash and I lotion my feet , not on or in the ulcers , with the same brand. I don’t know how much more I can take. It’s taken so much from my trying to function. I know I annoy the doctors with tons of questions but I’m tired of this trial and error. Is there any light at the end of this tunnel?

I soak my ulcers in Condy's Crystals = Potassium Permanganate. You can buy it from the chemist. A Tablespoon of it will last a long time. Only need less than a pinch. I dissolve it in a glass of hot water first, then add it to the water in whatever I'm soaking my feet in - at the moment a 4" deep tray, but have used a large rubbish bin when I had them up my legs. The colour you soak in should be like a strong rose wine. It turns your legs and nails brown. It's anti bacterial and more. I then clean out of the ulcers what I can, and put emla on them which numbs them enough after an hour, to debride them some more, to get all the slough off. Then I use acticoat flex 3, cut to the size of each ulcer, wet it and cover it with a porous sticking plaster so I can spray water on the acticoat through the dressing 3 or 4 times a day. Then every third day I repeat the process. Acticoat Flex 3 should be changed every three days. I have also used Iodosorb an iodine gel in a tube, covered with cuticerin and gauze, also using the emla to debride etc. Iodosorb needs to be changed when it loses colour as it has used its usefulness at that stage. My second round of leg ulcers was biopsied as Leukocytoclastic Vasculitis, which looks and acts just the same as the Lilvedoid Vasculopathy biopsied first time around. I was taking 300mg aspirin for the livedoid. now I take colchicerine for the Leuko. WHAT DO YOU OTHERS DO ???

Hi @ruthnz.First of all my apologies for the delay of my answer.Has your doctor tried blood thinner use;

Hi @erina306,courage!!First of all please accept my apologies for the delay of my answer.Have your doctors tried other blood thinners,since the medications you used were of no help;Please let us know!

No worries at all. Yes, they tried a few but I’d end up with adverse reactions. I’m so sensitive to meds that we are running out of options.

After the LV diagnosis I was on 300mg of aspirin a day, and the LV which started Jan 2019 finally cleared to nothing Apr 2020. Along the way I tried Xarelto and Trental (pentoxifylline) but my body didn't like them and I reverted to the aspirin both times. So I was clear Apr 2020-July 15 2020 when I woke with red spots from end of toes to top of legs. I saw the Derm a week later and biopsy diagnosis was Leukocytoclastic Vasculopathy and I changed from Aspirin to Colchcine twice a day. Some of the spots turned into ulcers just like the LV spots did. My treatment was the same. Soak lower legs for 20 mins in Potassium Permanganate (just like for LV), clean what I could from the ulcers, apply Emla, go to Hosp Clinic where the District Nurse debrided and redressed the ulcers.. 4th Oct I developed cellulitis and was in hospital 5 days and those Dr's reduced the Colchicine to once a day. Treatment of the ulcers has been the same as for LV. I was finally signed off from the Hosp District Nurse Clinic this week. I still have dried ulcers along the outside edges of my feet and am wearing cotton stocking over them till the dried skin falls off. Still can't really wear shoes 🙁 On the right leg which had the cellulitis I wear compression stockings during the day and take off at least an hour before going to bed. I sleep with the end of the bed raised about 20cm. So far so good. On Monday I'm going to a Homeopath bec my immune system is now attacking my kidneys and I just don't want to go any further down this auto immune road. Five auto immune crap things going on at 68 is enough. I don't want to spend the rest of my life living like this with the possibility of more developing.

Which medications did you try and what were the adverse reactions;

Did your doctor try heparins;

Haven't had heparin. LV is where the platelet shell becomes hard so they stick together instead of passing each other in the blood and come to the surface of the skin.. Aspirin supposedly softens the outside shell. So it's more than a blood thinner. Heparin Platelet google = Ordinarily, heparin prevents clotting and does not affect the platelets