Livedoid vasculopathy

Hi Logansnana, Go to Team Inspire and look for Lividoid vasculopathy . Lots of good info there. They saved my life. Zenk

Hello ...I am writing on behalf of my 44 year old daughter who has been battling L V with atrophie blanche for several years. It is getting progressively worse. She is trying to continue working at her business (she runs her own hair salon) but it is getting harder and harder. I am trying to help out by researching new avenues. My heart is breaking not only for my daughter but for all of you who are suffering so with with this enigmatic disease. You are all in my prayers for continued strength and courage. What I am puzzled about is that my daughter's vascular physician (Kaiser in California) is now insisting that she undergo a procedure called endovenous ablation. I have found some medical journals that address its use for LV but can't find any posts anywhere from people who have actually undergone this treatment. Has anyone else heard of this or had any luck with it? Thank you in advance for any light you can shine in our tunnel.

Hi Tina, If you definitively by biopsie have lividoid vasculopathy not Vasculitis, research seems to indicate that it is best treated with blood thinner. Your primary care doc could google lividoid vasculopathy and see the articles that show these results. The one done in Germany is the best one. Zenk

Zenk, I was diagnosed with vasculopathynafter 3 biopsies.. but my primary care doctor says different and I dont have a rheumatologist.. I am from Ct an this disease is so rare, no one knows how to treat it, so sadly I have been suffering for some time.

Hi Tina, The reason I ask about Vasculopathy and Vasculitis is because they are each treated quite differently. I was diagnosed with a punch biopsy by a dermatologist , after ruling out Vasculitis by my rheumatologist. I just have Lividoid Vasculopathy. which is a vascular illness of the very small vessels in and around my wounds. If I had Vasculitis , I would have been treated by my rheumatologist with anti-inflammatory medications. Zenk

Funny.. my derm doctor sys its vasculopothy, but my primary says vasculitis, so who knows.

Hi Tina, Do you have Lividoid vasculitis and lividoid vasculopathy also? Zenk

HinZenk, Right now only Xeralto, due to a dvt in 2015. I have tried all the usual meds, but nothing helped. Went to a new derm doctor an they gave me a months worth of prednisone, due to havi g vasculitis... I've had LV for almost 13 yrs now., but this is the worst it has ever been. It has now moved down my calves, to my ankles an feet.. Have nerve pain, so take gabapentin when needed. I`m just so tired of not being able to walk and enjoy my life.. willing to try all the meds again, an pray for relief. Tina

Hi Tina, What treatments are you on now? The research I have read for Lividoid Vasculopathy and Methotrexate is that Methotrexate is not helpful in LV because Methotrexate is a drug used for inflammation . LV is a vascular disease . That is not to say that it would not help you. I took Metho many years ago for primary sjogrens syndrome and it worked like a charm , because Sjogrens is an inflammatory illness. I took chemo for breast cancrer in 2012 and was in terrible misery with skin peeling on my feet. No chemo for me. Zenk

Have any of you tried methotrexate? Which is a form of chemotherapy.