Livedoid vasculopathy

Thank you, it's nice to see that there is more info about LV, The doctors haven't put me on blood thinners yet other then aspirin 325mg (was 81mg). I have been getting treatment from my PCP, my Rheumatologist that's been treating me for Fibromyalgia, a Dermatologist that treated me 14 years ago for LV and those at the Hospital Wound Care. I do have pain most of the time but not all from LV, I have been taking Prednisone and about 4 different antibiotics 2 to 3 weeks at a time for the last 6 months. For the wound treatment I was using a wound vacuum (lots of fun) I was so happy when they told me I could stop using it. but it helped, now I have a 3 layer compression sock. I think I'll be asking about some other treatments, some of the meds are not so good for long term use.

Hello @swing1929,

It’s great to see you back on Connect, and although I'm so sorry to hear that you haven't found any relief, I'm really glad that you chose to join this discussion.
Would you share some of your insights and experiences with the members in this group? Sometimes, what may not work for one, may be of great help to another!
Welcome back, Jenn.

Pain relief is the biggest obstacle in my opinion... I have tried everything to no avail.

Hello @gtalan,

Welcome to Connect; I see that you have some excellent support from @patientrea...thank you so much patientrea!

We have some incredible discussions about LV here on Connect. I encourage you to read them here:

– LIvedo Vasculopathy or Livedo Reticularis (whole body face white) http://mayocl.in/2qoA4jr
– Treatment options for Lividoid Vasculopathy (LV) http://mayocl.in/2cH8jhA
– Livedoid vasculopathy http://mayocl.in/2dd7pKa

@spence, @prairiesmoke @mlemieux @angelasmom @vickieb @zenk @gonefishinmt @grandmaabby @srusti @canderson12 @marlene64, would you join in to share your experiences and insights about livedoid vasculopathy?

@gtalan, have you discussed other treatment options (blood thinners, Doxycycline Therapy) with your doctor, or perhaps thought of getting a second opinion regarding getting relief?

You don't have to say sorry! In this discussion we try to help each other!Have you discussed with your doctors any other treatment options in case the therapy doesn't help;

Sorry I'm not a doctor, The doctors have called it vasculopathy but for some time we been calling it vasculitis .. my bad.
As far as the diagnosis, There has been lots of blood and other samples sent to the lab and my Rheumatologist and a Dermatologist have examined me as well as those at the hospital wound care.

And something I forgot:Livedoid vasculopathy as far as I know is vasculopathy and not vasculitis!

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

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.

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