Treatment options for Livedoid Vasculopathy (LV)

Once they finally diagnosed me after 10 years of horror I got 1 pain-free year with pentoxifilline but just one and now back to wanting to smash my feet with a hammer.

I have just been diagnosed with livedoid vasculopothy and I am being shuffled around from Doctor to doctor. Is there medicine for this? Does it go into remission? Nobody can answer or help me . Tuesday I see a hemotologist

@marlene64 I'm curious about the May-thurner Syndrome and LV. Are your ulcerations unilateral? My daughter has LV and I'm wondering if this is something everyone should look into if they have LV? She's 19 and so young to be suffering so much. She's had it almost six years. High-dose lovenox works, but as they decrease the ulcers come back. Xarelto didn't work. HBOT didn't work.

Also, has anyone tried to treat LV like Lyme, as though a pathogen is causing hypercoagulation?
@zenk

Thank you for your input!

Yes,I told him everything.The thing is,my ulcers got really bad after everything he prescribed.So,I took therapy prescribed by another doc last year,steroids unfortunatelly,but they worked.Together with a naturally based cream for ulcers,the only one I could use,and it helped too.I am getting better,but it took three months,I have deep scars on my ankles.

Hi @lelah76, I'm tagging @zenk to make sure they also see your intro post. Have you told the new doctor that the new topical steroids are making things worse?

I am new to this,well not new to the swelling and ulcers,but I got diagnosed recently.Last year I was treated for vasculitis with glucocorticosteroides and they worked.This year they kept the swelling away,but as soon as I lowered the mg of prednosone the inflamation came back,my ulcers got worse,skin around them red.My new doc got me off steroides and prescribed trental 2x a day,aspirin, diosmin x1,and compressive socks.On my ulcers I should put ag atrauman compresses,but they don't work for me.Also,topical steroides make my skin worse. My swelling got worse since then.This is really annoying,I have had this for years,but before it was just skin rash and swelling,it looked ugly and the pain was real,but now is 10x worse. Maybe I should mention that my platelets group or stick together when they are counted at the lab,so I always have to tell them and they use something else to count them.

I take eliquis 1o mgs a day. I have blood clots in ly left leg from my ankle to my stomach. I hope things go well for you. I seen this site so I am new to everything

Hi Brian, welcome. I'm sure your tips will be welcome by members like @prairiesmoke @marlene64 @patientrea @vickieb and @zenk, and to future members.

While taking time to have your feet up above your heart, what activities are you able to do? You measure the time walking vs sitting with feet above the heart. Do you also calculate the time spent on your feet for other activities, ie washing dishes, gardening etc.?

Just hoping to help someone looking this up. I have had this now for 5 to 6 years, and the only real help I get is by keeping my feet up very high and I mean like 2 and a half to 3 feet over my heart very uncomfortable but you should be able to feel the blood flow change and literally the pain seaping out of your legs. The only problem you will start to have is first your hips get hurting very bad but still not as bad as the pain in your legs. And then a big problem is even when you do feel like you can walk because pain in your legs subsided your hips will feel like they suddenly give out and leave you stuck until you sit for a while. Compression socks help for short term use feel much better and you can walk much more distances but after a couple of days be careful because the swelling will go wherever the socks end. First thing I did was get longer socks up to the knee. And then started swelling there and then I got like pantyhose compression socks that went up my whole leg gut then started swelling in genatal area and got hemroids bad and I had never had them. So socks were out. Now has been years and I learned to keep my feet up about the same time I walk. So if I want to stand or walk for 2 hours then I stop and lay with my feet up for 2 hours and this has kept me from having open wounds since it has started. I still have pain every day but not as bad as with the open wounds any questions or need someone to talk to, send me a private message or post a reply. Good luck. Brian

Hi @fitchick40 you may have noticed I moved your post to this existing discussion on Vasculitis as @johnbishop suggested so that you can connect with others who have similar experiences. Simply click VIEW AND REPLY in your email notification to get to your post.

@fitchick40 is the rash your only symptom at this time or do you have others?