Livedoid vasculopathy

TOPICAL - i use EMLA cream (before debriding) which takes about an hour to work and lasts 1-3 hours. Not a nights worth of sleep but it may help you get to sleep. I find that raising my legs hurts when I'm sitting or lying down, whereas sitting with my leg normally doesn't hurt, and with it raised about 4" -6" when sitting is OK too. Lying down flat suits me best. Lidocaine is also an option but not as strong as Emla
PAIN KILLERS - I take 2x 500mg paracetamol and 30 mg codeine. I have also taken another paracetamol or panadeine straight after the debriding - about an hour and half after taking the above. We are not one size fits all and I'm tall and not skinny so feel comfortable taking more than someone who is short and small.
Ruth in NZ

What types of topical pain killers is everyone using? How do they work? Last night I did not get much sleep for the pain in my feet. I have two ulcers on the instep of my left foot that were zinging me all night last night. I am looking to see if there is something that can take the edge off long enough to let me sleep.

I was diagnosed by a young physicians assistant years ago. She had the curiosity and tenacity to keep looking for the problem. I don't have immunology problems but I do have Factor V Leiden that causes blood to clot abnormally quickly. About 20% of people with livedoid vasculopathy have Factor V. There are articles and pictures of LV on the internet. It would probably help to print them off and take to whatever Dr. you see, also any notes on your treatment at Mayo. Drs. had me tested for all sorts of things like Lupus and RA after I was diagnosed with LV, they can't seem to realize that we simply have something that they aren't familiar with. Good luck!

Hi there....
I used to be treated at Mayo Clinic by a wonderful doctor who is my hero! It took three long painful years to get my diagnosis. Dr. David Wetter was the one who figured out the puzzle. I was sent to Derm, then to vascular and then neuro and then back to Derm. I say all of that because now I have moved to be near family here in Fort Wayne, IN and I am starting all over again. Nobody has heard of this condition and nobody knows where to send me. I am in the middle of what I call a "break out" and I am being sent to Dermatology next month. If they can't help me, the plan is to send me to Rheumatology. If they can't help me, the plan is to send me to cardio-vascular. I have been in remission for about a year and am now going through a break out. It's frustrating and upsetting to be in so much pain and feel like you are going through it alone.

I am noticing that other with LV also have some sort of immune deficient disease. I have always felt like the LV diagnosis was only half the problem. Every biopsy they took (and there were several), I ended up in the hospital on IV antibiotics because I wound up with cellulitis. Not once or twice but every time they biopsied me. My body was not able to fight off whatever pathogen I was fighting. I am extremely fatigued all the time and some days it takes every fiber of my being to get up out of bed. Joint aches, swelling of feet and ankles.... red patches on my cheeks. I can't address any of these issues until I am being seen by the doctor and specialty who will take me on here.

I am sorry. I would love to hear if I am crazy or if this is something to pursue? It has been a bit of a rough patch for me at the moment. Does anybody else suffer from neuropathy with LV? I do.

Andi

I use Microdacyn 60 Wound Care spray to clean the ulcerated area. I use it in a spray bottle and refill it from the 1 litre bottle I bought onlline http://www.biologiq.nl/UserFiles/Flyer-OculusMicrodacyn-JAN%202014.pdf

Hi Ruth, When I went to wound care they used the lidocaine solution before debridement. You are right, it isn't as effective a pain killer. I use medihoney because it is a natural debrider and kills many bacteria, so I don't have as much to clean out of the ulcer. Thanks for the info on topicals for numbing the area, I will check with my pharmacist!

All suggestions are valuable!

Hi Sheila, There is a product called EMLA - comes as a tube of cream - to use when you clean the ulcer out. Should be available OTC or to order from your local pharmacy. Put some on and cover it with cling film or OPSITE FLEXIFIX (Smith and Nephew) for at least an hour before you debride/clean out. It numbs the area and will wear off after two hours or so, so will start to hurt about then. I also take Paracetamol/codeine about 1.5 hours before a debriding session.
Another numbing cream which is less powerful is Lidocaine, used in the same way. I also use compression stocking to hold the pads in place, rather than plasters. The skin is so fragile.

Hi Zink, I use Medihoney with calcium alginate as a wound dressing and reapply it every other day to the ulcer. I wash the ulcer with clear running water before applying the honey, putting a thin layer of honey on the ulcer and then covering with a nonstick, non latex containing pad. Since I am allergic to adhesives I wear compression stockings to hold the pad in place and to help keep pressure on my veins. Once a week I scrape dead cells and bits of honey out of the ulcer with a sterile platinum loop. This is painful, but then the ulcer is painful whenever I move. I change the pad once a day, sometimes more if I am active and the ulcer drains a lot.
Sheila

Hi Shiela, So sorry about your experience at wound care. What are you doing for treatment going forward? Keep in touch. Zenk