Livedoid vasculopathy

Posted by angelasmom @angelasmom, Aug 3, 2011

Looking for people with the rare blood clot and leg and foot ulcer disease of Livedoid Vasculopathy. Mayo seems to be experienced at treating this disease so I thought I would find you here, I have it.

Interested in more discussions like this? Go to the Blood Cancers & Disorders group.

@mlemieux

I also have it. Been dealing with blood clots since I was 18, ulcers and Livedoid Vasculopathy for the past six years. I am really excited to have found others! I hope you’re still active here and you get this message!

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Primary or secondary polycythemia?

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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

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

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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

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@kanaazpereira

Hello @grandmaabby,

I’m so sorry to learn about your condition, and I’m glad that you’ve come to the Connect community; you will find that you are not alone, here.

If you would like to seek help from Mayo Clinic, please call one of our appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63. The number for Mayo Clinic in Minnesota is 507-538-3270

The name atrophie blanche is also sometimes applied to conditions associated with livedoid vasculitis, livedoid vasculopathy, or livedo reticular and patients who present with atrophie blanche may have serious vascular inflammation.
A couple of members @angelasmom and @famalvar75gmailcom have talked about atrophie blanche in the past, and i hope @spence, @amjor2, @vickieb, @swing1929, @zenk, @marlene64, @patientrea, @gonefishinmt, @mlemieux, will also join in and share their insights.

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

@grandmaabby, such debilitating conditions are not only physically draining, but can affect one’s mental/emotional well-being too; how are you finding relief right now?

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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

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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..

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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?

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@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

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@srusti

@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

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@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!

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@srusti

@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

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@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

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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.

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

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