Livedoid vasculopathy

All suggestions are valuable!

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!

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 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 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!

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.

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

Andi,
A topical pain reliever has been a great help to me over the past 10 years for my painful ulcers. I have used a prescription compound in cream form. The prescription includes 10% ketamine, 10% gabapentin, 5% baclofen, 5% diclofenac, 3% lidocaine, and 2% lipoderm. This cream medication requires a prescription and must be obtained through a compounding pharmacy. This prescription was not covered by my insurance. I paid $90.00. Alternatively, you could get a prescription for Lidocaine Hydrochloride Jelly USP 2%. I much prefer the compounded prescription. I have been able to use it several times a day for a number of years as needed. It has been a great help and really takes the edge off the pain for a few hours. You don't have to worry about using it too much. My wound center doctor writes this prescription for me. Your primary care doc could probably write it too.

Thank you, Zenk. I had a neurologist who had his own cream that he used to give me and it was expensive but it was worth every penny. Now that I have moved out of state and am having to go through the gauntlet of finding a new doc for this, I'm having a breakout after a year of remission. The timing couldn't be worse but we do what we have to. I will bring in the recipe for your cream to my Primary Care Physician next week to see if this is something I can get. Thanks!

Thank you, Ruth. I agree that we are not a one size fits all group. I was diagnosed and treated at Mayo Clinic for the past decade before moving. I remember clearly that they said we all have different extremes and symptoms. I have neuropathy with mine and the medications for that make me extremely nauseated and dizzy. Pentoxyfilene gives me the worst headaches and I am fatigued all the time. It is hard to remember what normal was actually like. I did take Xarelto for a year and it was a godsend but it is so expensive even with insurance. I did not have any breakouts on Xarelto at all.