1. < Blood Cancers & Disorders

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 Support Group.

Amanda Burnett | @amandaa | Oct 10, 2020
In reply to @susank2020 "Hi! I'm not sure how this works so forgive me if I post in the wrong..." + (show)
@susank2020

Hi! I'm not sure how this works so forgive me if I post in the wrong the place. Over a year and half ago my right ankle was red, hot and swollen. I thought it was due to some ongoing orthopedic issues and went to see a sports medicine doc. Long story short, I have seen two sports med docs, two orthopedic surgeons, two rheumotologists, two dermatologists, a cardiologist, had two MRI's, several ultrasounds, and several biopsies. After several ulcers broke open (and made life unbearable), I begged for prednisone (the only thing that had worked to that point). I took that for several months (the ulcers healed). I weaned myself off and had one more biopsy that came back with a diagnosis of LV. The doctor started me on the generic of Trental (can't remember the real name). Although, i haven't had any ulcers in several months, the swelling and redness are still spreading. I feel like there's more going on than just the LV. How do I find a doctor who has treated this before? Any chance my foot will ever look normal again? Any chance I will be able to be active again?

Any help is appreciated!
Susan

Jump to this post

Hi @susank2020, I add my welcome to @ruthnz's response. So glad you were able to join the conversation. I would like to invite @zenk and @curtismiller back to the discussion. I am glad to hear that the ulcers have healed, but it must be difficult to still struggle with the swelling and redness that are still spreading.
I am not sure where you are located, Susan, but Mayo does have a physician in Arizona that specializes in livedoid vasculitis.
https://www.mayoclinic.org/biographies/pittelkow-mark-r-m-d/bio-20053914
Does it interfere with your livelihood during the day? What have your local physicians recommended for the swelling, if anything?

REPLY
eva75 | @eva75 | Oct 10, 2020
In reply to @susank2020 "Hi! I'm not sure how this works so forgive me if I post in the wrong..." + (show)
@susank2020

Hi! I'm not sure how this works so forgive me if I post in the wrong the place. Over a year and half ago my right ankle was red, hot and swollen. I thought it was due to some ongoing orthopedic issues and went to see a sports medicine doc. Long story short, I have seen two sports med docs, two orthopedic surgeons, two rheumotologists, two dermatologists, a cardiologist, had two MRI's, several ultrasounds, and several biopsies. After several ulcers broke open (and made life unbearable), I begged for prednisone (the only thing that had worked to that point). I took that for several months (the ulcers healed). I weaned myself off and had one more biopsy that came back with a diagnosis of LV. The doctor started me on the generic of Trental (can't remember the real name). Although, i haven't had any ulcers in several months, the swelling and redness are still spreading. I feel like there's more going on than just the LV. How do I find a doctor who has treated this before? Any chance my foot will ever look normal again? Any chance I will be able to be active again?

Any help is appreciated!
Susan

Jump to this post

Hello Susan,
I've been struggling with LV for over 10 years and I did biopsy that also confirmed LV only. So if you did the biopsy and that confirmed your LV you should't worry that there might be something else. Swelling and redness are also part of the LV. This condition is treated by dermatologists only and the only therapy that works out so far is anticoagulants or blood thinners and the best one is Xarelto. I was on Xarelto tabs for over 3 years and I was ulcer free from 2012 to 2015 but than I became resistant to it. Than I had a bad flare up for over 3 years (during which period I was on various medicine like Colhicine, Trental, Prednisolone, Nifedipine etc, but nothing worked for me) and since 2018 till now I take Acenocumarol that still works fine for me. I am ulcer free for over a year now.
So, I think you should consult a good dermatologist about the LV and anticoagulants. Also, there are some good and friendly groups on Facebook with people that deal with this condition, where you can also find very good advises and learn from their experiences.
Best regards,
Eva

REPLY
2 replies
patientrea | @patientrea | Oct 10, 2020
In reply to @susank2020 "Hi! I'm not sure how this works so forgive me if I post in the wrong..." + (show)
@susank2020

Hi! I'm not sure how this works so forgive me if I post in the wrong the place. Over a year and half ago my right ankle was red, hot and swollen. I thought it was due to some ongoing orthopedic issues and went to see a sports medicine doc. Long story short, I have seen two sports med docs, two orthopedic surgeons, two rheumotologists, two dermatologists, a cardiologist, had two MRI's, several ultrasounds, and several biopsies. After several ulcers broke open (and made life unbearable), I begged for prednisone (the only thing that had worked to that point). I took that for several months (the ulcers healed). I weaned myself off and had one more biopsy that came back with a diagnosis of LV. The doctor started me on the generic of Trental (can't remember the real name). Although, i haven't had any ulcers in several months, the swelling and redness are still spreading. I feel like there's more going on than just the LV. How do I find a doctor who has treated this before? Any chance my foot will ever look normal again? Any chance I will be able to be active again?

Any help is appreciated!
Susan

Jump to this post

Hi!Please be optimistic!What is the diagnosis given to you by the doctor who started you on Trental generic?

REPLY
patientrea | @patientrea | Oct 10, 2020
In reply to @eva75 "Hello Susan, I've been struggling with LV for over 10 years and I did biopsy that..." + (show)
@eva75

Hello Susan,
I've been struggling with LV for over 10 years and I did biopsy that also confirmed LV only. So if you did the biopsy and that confirmed your LV you should't worry that there might be something else. Swelling and redness are also part of the LV. This condition is treated by dermatologists only and the only therapy that works out so far is anticoagulants or blood thinners and the best one is Xarelto. I was on Xarelto tabs for over 3 years and I was ulcer free from 2012 to 2015 but than I became resistant to it. Than I had a bad flare up for over 3 years (during which period I was on various medicine like Colhicine, Trental, Prednisolone, Nifedipine etc, but nothing worked for me) and since 2018 till now I take Acenocumarol that still works fine for me. I am ulcer free for over a year now.
So, I think you should consult a good dermatologist about the LV and anticoagulants. Also, there are some good and friendly groups on Facebook with people that deal with this condition, where you can also find very good advises and learn from their experiences.
Best regards,
Eva

Jump to this post

Hi!Very informative and helpful answer.Is there any knowledge about the factors that cause blood thinner resistance?Many thanks!

REPLY
1 reply
eva75 | @eva75 | Oct 10, 2020
In reply to @patientrea "Hi!Very informative and helpful answer.Is there any knowledge about the factors that cause blood thinner resistance?Many..." + (show)
@patientrea

Hi!Very informative and helpful answer.Is there any knowledge about the factors that cause blood thinner resistance?Many thanks!

Jump to this post

Hello,
I wish I had more information about it but unfortunately I don't! I don't even know who would be able to help me find out about that....

REPLY
1 reply
patientrea | @patientrea | Oct 10, 2020
In reply to @eva75 "Hello, I wish I had more information about it but unfortunately I don't! I don't even..." + (show)
@eva75

Hello,
I wish I had more information about it but unfortunately I don't! I don't even know who would be able to help me find out about that....

Jump to this post

Hello,
many thanks for your reply.Sometimes blood thinners stop working for unknown reasons.I am very glad to hear that acenocoumarol helps you so much.

REPLY
zenk | @zenk | Oct 17, 2020
In reply to @eva75 "Hello Susan, I've been struggling with LV for over 10 years and I did biopsy that..." + (show)
@eva75

Hello Susan,
I've been struggling with LV for over 10 years and I did biopsy that also confirmed LV only. So if you did the biopsy and that confirmed your LV you should't worry that there might be something else. Swelling and redness are also part of the LV. This condition is treated by dermatologists only and the only therapy that works out so far is anticoagulants or blood thinners and the best one is Xarelto. I was on Xarelto tabs for over 3 years and I was ulcer free from 2012 to 2015 but than I became resistant to it. Than I had a bad flare up for over 3 years (during which period I was on various medicine like Colhicine, Trental, Prednisolone, Nifedipine etc, but nothing worked for me) and since 2018 till now I take Acenocumarol that still works fine for me. I am ulcer free for over a year now.
So, I think you should consult a good dermatologist about the LV and anticoagulants. Also, there are some good and friendly groups on Facebook with people that deal with this condition, where you can also find very good advises and learn from their experiences.
Best regards,
Eva

Jump to this post

Eva, thanks so much for you answer on Xarelto. I will look into alternatives. What dose were you on of Xarelto?

REPLY
1 reply
eva75 | @eva75 | Oct 18, 2020
In reply to @zenk "Eva, thanks so much for you answer on Xarelto. I will look into alternatives. What dose..." + (show)
@zenk

Eva, thanks so much for you answer on Xarelto. I will look into alternatives. What dose were you on of Xarelto?

Jump to this post

Hello Zenk,
At the beginning I took Xarelto 20mg/day. During the first 6 months I took 20mg/day, than we reduced to 15mg/day, 10mg/day and 5mg/day (one year in total). Than I was free of tablets for a year and a half when it started again. I went back to Xarelto 20mg/day but it never worked again. Than the Dr tried some other alternatives such as Apixaban and Eliquis but nothing worked well. I was so bad with ulcers in October 2018 and than I went to the University hospital. My doctor decided to do more tests to see if there is any other underlying condition and did biopsy but again it was confirmed that it was just livedo vasculopathy. So he put me on injections Fraxiparine different dosages for 13 months, until December 2019. Than the Dr. decided to interrupt Fraxiparine and prescribed Farin tablets. He was expecting the INR values to be between 2 and 3 but I never reached INR value more than 1,8. That's why he told me to start Acenocumarol instead but still my INR values remained very low around 1,2 to 1,5. But still I am ulcer free and the Dr said this is a good indication for me, since I am ulcer free. In the last control I had last week, the Dr. reduced Acenocumarol in hallf tablet a day. I don't know how is this going to work because I am used to very high doses of anticoagulants and I fear the ulcers might come back!
Hope you will understand the chronology here, because I guess am not that good in explaining.
Thank you and best regards,
Eva

REPLY
1 reply
patientrea | @patientrea | Oct 19, 2020
In reply to @eva75 "Hello Zenk, At the beginning I took Xarelto 20mg/day. During the first 6 months I took..." + (show)
@eva75

Hello Zenk,
At the beginning I took Xarelto 20mg/day. During the first 6 months I took 20mg/day, than we reduced to 15mg/day, 10mg/day and 5mg/day (one year in total). Than I was free of tablets for a year and a half when it started again. I went back to Xarelto 20mg/day but it never worked again. Than the Dr tried some other alternatives such as Apixaban and Eliquis but nothing worked well. I was so bad with ulcers in October 2018 and than I went to the University hospital. My doctor decided to do more tests to see if there is any other underlying condition and did biopsy but again it was confirmed that it was just livedo vasculopathy. So he put me on injections Fraxiparine different dosages for 13 months, until December 2019. Than the Dr. decided to interrupt Fraxiparine and prescribed Farin tablets. He was expecting the INR values to be between 2 and 3 but I never reached INR value more than 1,8. That's why he told me to start Acenocumarol instead but still my INR values remained very low around 1,2 to 1,5. But still I am ulcer free and the Dr said this is a good indication for me, since I am ulcer free. In the last control I had last week, the Dr. reduced Acenocumarol in hallf tablet a day. I don't know how is this going to work because I am used to very high doses of anticoagulants and I fear the ulcers might come back!
Hope you will understand the chronology here, because I guess am not that good in explaining.
Thank you and best regards,
Eva

Jump to this post

Hello @eva75,can you please tell us which medication is Farin tablets?
Thank you so much.

REPLY
1 reply
eva75 | @eva75 | Oct 20, 2020
In reply to @patientrea "Hello @eva75,can you please tell us which medication is Farin tablets? Thank you so much." + (show)
@patientrea

Hello @eva75,can you please tell us which medication is Farin tablets?
Thank you so much.

Jump to this post

Hello patientrea,
Farin stands for warfarin. I believe you have heard about warfarin (blood thinner) because it is often mentioned as the therapy of choice for LV.
Best regards,
Eva

REPLY
1 reply
View MoreView Less
Please sign in or register to post a reply.