Livedoid vasculopathy

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

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..

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?

@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

@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!

@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

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.

Hi @gtalan can you please tell us about any other medications you have used to treat this disease;Please try to be optimistic!

Hello, mostly the prednisone as much as 60mg then less each week till 5mg. Been on this about 4 times so far this year, I don't recall the names of them all. I see that more doctors know more about Vasculitis then they did 14 years ago, back then I had one doctor that heard of it and had to get his med books to figure how to treat it and he did a good job, this time I asked if he was ready for round #2. This time around it's not going into remission any time soon.
They also found some damage in a vein in left leg where I had a clot years ago, The vasculitis may have also have damaged this vein too.

Hello,is the diagnosis based on clinical grounds only or has your doctor asked for histologic confirmation;