Livedoid vasculopathy

I had it for 14 years now, large wounds on left shine and ankles. At the first of this year it came out of remission and I still have a deep wound on my left leg and it's very painful. I been on prednisone and four different antibiotics and going to wound care at the hospital and used a wound vacuum and now pads on the wound and a 3 layer compression sock. This Livedoid vasculitis is very painful.

@patientrea thanks for ur reply yes i read about xarelto and its side effects i told my sister to talk about it to her doctor. I hope its available in India or any other substitute.

Thanks

@srusti welcome to this community.I believe we have to do everything we can to help your sister.Discussion here helps in many ways.@zenk has talked about xarelto,which has been very helpful in my condition.You have shown us the latest prescription.I see no xarelto.It might be good to have a talk first with her doctor,because any change in medications has to be made only by the prescribing doctor.

Wishing best of luck!

@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

Welcome to Connect, @srusti,

I'm so sorry to hear about your sister, and I'm glad you've joined us.

@spence, @prairiesmoke @mlemieux @angelasmom @vickieb @zenk @gonefishinmt @grandmaabby, would you join in and share your experiences and insights with @srusti?

You may also wish to view this discussion about, “Treatment options for Lividoid Vasculopathy (LV)” here: http://mayocl.in/2kZ4s0k and this Mayo Clinic patient story: http://mayocl.in/1l54vIS

@srusti, how does your sister handle the pain and other symptoms of Livedoid Vasculopathy? What has her doctor recommended?

My sister is facing Livedoid Vasculopathy from 2013 to till date we try many treatments we got temporary results but no permanent situation now she becomes hopeless. I can understand what kind of pain you are dealing with. pls pls i need permanent solution for this..

Just dealing with the ulcers as best I can. It depends on what the ulcers look like day to day on what I use to dress them from unna boot to a manuka honey pad to vaseline (which is what University of Michigan advised me to do) but I have noticed a big difference it is doing to me this past year. I am so tired all the time and not wanting to do all the things I used to love to do. Guess when you can't wear any shoes you dont really feel good about going out. I am going to look on the links you suggested thank you

Secondary
It started with atrophie blanche and ulcers and got worse when the nerves in my feet were affected
Now im diagnosed with erythrocytosis and have a monthly phlebotomy scheduled

So good to hear back from you @spence!
Were you diagnosed with primary or secondary polycythemia? What symptoms led to this diagnosis?

Presently, my scars have started hurting much worse and I have an ulcer forming in the center of the scar on my right ankle near my Achilles tendon