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.

@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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@patientrea

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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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.

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

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@patientrea

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

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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.

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@gtalan

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.

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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;

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@gtalan

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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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?

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

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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.

Liked by srusti

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@gtalan

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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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.

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@gtalan

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.

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Hello again!Courage!!!I was started on acetylsalicylic acid plus dipyridamole.Some improvement at the beginning,but not pain relief and wound healing.And all of the sudden I read zenk’s post about xarelto.Complete healing!!I have to admit that a therapy that helps some people might not help others.TRY!!!!Talk with your doctor about other treatment options.Best of luck!Be in touch!

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@gtalan

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.

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@zenk thanks a lot!!I owe you

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@swing1929

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

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Hello @swing1929!Can you please tell us all the therapies you have tried;

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