Livedoid vasculopathy group: Checking in, how are you doing?

Posted by zenk @zenk, Sep 19, 2019

Wonder if anyone still posts in the Lividoid vasculopathy group ?

Hello. I found this site today. My daughter has Lividoid vasculopathy. Is covid19 vaccine safe and her skin condition will not get worth?

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@ykh128

Hello. I found this site today. My daughter has Lividoid vasculopathy. Is covid19 vaccine safe and her skin condition will not get worth?

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Hi @ykh128 Welcome to Mayo Clinic Connect. While we’re backed by Mayo Clinic we are a community forum comprised of members such as yourself who “connect” with each other to help find answers, so we can’t diagnosis medical issues or offer treatments.

You’re posing a really tough question regarding the Covid-19 vaccination for your daughter. It’s really impossible to know how her Lividoid Vasculopathy would react to the vaccine, as well as how she would react to getting the virus itself. From the number of people we see in our Connect forum, long haul Covid symptoms from the virus can be pretty debilitating making a really firm justification for getting the vaccine to help our bodies to be ready to launch an attack should we become exposed to the virus. Vaccinated people, if they do contract the virus, tend to have a more mild case with less side effects. Unfortunately, the vaccine can also trigger some reactions in preexisting conditions, but generally those are short lived. There is really no way of predicting how each person will respond.

Is your daughter receiving any treatment for her LV? It really would be best if she contacted her primary care provider to get an answer based on her current medical state. Have you checked with her physician?
https://sharing.mayoclinic.org/2015/11/25/surprise-diagnosis-spurs-learning-curve-search-for-help/#:~:text=Diagnosed%20with%20a%20rare%20disease%2C%20livedoid%20vasculopathy%2C%20Cheryl,An%20uncommon%20disorder%2C%20livedoid%20vasculopathy%20affects%20the%20skin.

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@loribmt

Hi @ykh128 Welcome to Mayo Clinic Connect. While we’re backed by Mayo Clinic we are a community forum comprised of members such as yourself who “connect” with each other to help find answers, so we can’t diagnosis medical issues or offer treatments.

You’re posing a really tough question regarding the Covid-19 vaccination for your daughter. It’s really impossible to know how her Lividoid Vasculopathy would react to the vaccine, as well as how she would react to getting the virus itself. From the number of people we see in our Connect forum, long haul Covid symptoms from the virus can be pretty debilitating making a really firm justification for getting the vaccine to help our bodies to be ready to launch an attack should we become exposed to the virus. Vaccinated people, if they do contract the virus, tend to have a more mild case with less side effects. Unfortunately, the vaccine can also trigger some reactions in preexisting conditions, but generally those are short lived. There is really no way of predicting how each person will respond.

Is your daughter receiving any treatment for her LV? It really would be best if she contacted her primary care provider to get an answer based on her current medical state. Have you checked with her physician?
https://sharing.mayoclinic.org/2015/11/25/surprise-diagnosis-spurs-learning-curve-search-for-help/#:~:text=Diagnosed%20with%20a%20rare%20disease%2C%20livedoid%20vasculopathy%2C%20Cheryl,An%20uncommon%20disorder%2C%20livedoid%20vasculopathy%20affects%20the%20skin.

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Thank you for reply,@loribmt. Currently she is taking Vitamin C 1000mg and Riboflavin 100mg by a Day. We asked her Dermatologist for Covid19 Vaccine at July. He said doesn't know how her body will react for Covid19 vaccine. Also if she may have a Covid19, it may be mild case because she is young. But it's difficult say her reaction for.Covid19 too. he said It's her decision for taking vaccine. We will try to ask her Dermatologist again. Thank you so much.

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@ykh128

Thank you for reply,@loribmt. Currently she is taking Vitamin C 1000mg and Riboflavin 100mg by a Day. We asked her Dermatologist for Covid19 Vaccine at July. He said doesn't know how her body will react for Covid19 vaccine. Also if she may have a Covid19, it may be mild case because she is young. But it's difficult say her reaction for.Covid19 too. he said It's her decision for taking vaccine. We will try to ask her Dermatologist again. Thank you so much.

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You’re most welcome. I wish there were definitive answers for you because I know that feeling of uncertainty too. So many unknowns with this virus but one fact is that the vaccine works in preventing and slowing down the advancement of the virus and milder breakthrough cases for people who have been vaccinated.

I found some previous discussions on LV that you might find interesting.

Livedoid vasculopathy https://connect.mayoclinic.org/discussion/livedoid-vasculopathy/
– Treatment options for Lividoid Vasculopathy (LV)
https://connect.mayoclinic.org/discussion/i-am-looking-for-outcomes-in-the-use-of-blood-thinners-in/
– Livedoid vasculopathy and thrombocytosis: related? https://connect.mayoclinic.org/discussion/livedoid-vasculopathy-1/

Will you let us know what you decide to do? We all learn by sharing on Connect.

I’d like invite a few members who have LV into this discussion.

Hi, @yoan02 @zenk @ruthnz @curtismiller, have any of you received the Covid -19 vaccination? If so, did you find any worsening symptoms with your LV? @ykh128 would be interested to hear about any reactions you might have had to the vaccine.

REPLY
@loribmt

You’re most welcome. I wish there were definitive answers for you because I know that feeling of uncertainty too. So many unknowns with this virus but one fact is that the vaccine works in preventing and slowing down the advancement of the virus and milder breakthrough cases for people who have been vaccinated.

I found some previous discussions on LV that you might find interesting.

Livedoid vasculopathy https://connect.mayoclinic.org/discussion/livedoid-vasculopathy/
– Treatment options for Lividoid Vasculopathy (LV)
https://connect.mayoclinic.org/discussion/i-am-looking-for-outcomes-in-the-use-of-blood-thinners-in/
– Livedoid vasculopathy and thrombocytosis: related? https://connect.mayoclinic.org/discussion/livedoid-vasculopathy-1/

Will you let us know what you decide to do? We all learn by sharing on Connect.

I’d like invite a few members who have LV into this discussion.

Hi, @yoan02 @zenk @ruthnz @curtismiller, have any of you received the Covid -19 vaccination? If so, did you find any worsening symptoms with your LV? @ykh128 would be interested to hear about any reactions you might have had to the vaccine.

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Hi
I received the vaccine ( Moderna ) back in May and yes I have been dealing with a couple of bad ulcer on my left leg for the past 5 weeks. I really don't know if the vaccine has anything to do with it but it has been 8 years since I had bad ulcers to the point where I've been going to the wound care clinic for treatment.
The wounds are finally healing, very slow but they are healing.

I'm still planning on going to the Mayo Clinic in Jacksonville but I really don't know who should I reach out to. I though I had to find a Hematologist but in recent research I found out that a Dermatologist should be the specialist when seeking for treatment

any advice would be appreciated.

thank you

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@yoan02

Hi
I received the vaccine ( Moderna ) back in May and yes I have been dealing with a couple of bad ulcer on my left leg for the past 5 weeks. I really don't know if the vaccine has anything to do with it but it has been 8 years since I had bad ulcers to the point where I've been going to the wound care clinic for treatment.
The wounds are finally healing, very slow but they are healing.

I'm still planning on going to the Mayo Clinic in Jacksonville but I really don't know who should I reach out to. I though I had to find a Hematologist but in recent research I found out that a Dermatologist should be the specialist when seeking for treatment

any advice would be appreciated.

thank you

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Hi Yoan, thank you for replying. Hard to know if it’s related to the vaccine or not but I’m sorry to hear about the flare-up of your LV. I’d never heard of this condition before until I responded to @ykh128 about her daughter having Lividoid vasculopathy. It sounds so painful and really difficult to deal with. What does your wound care entail?

From what I’ve been reading it looks as though a dermatologist is generally the specialist who works with this condition. If you’d like to see a doctor at Mayo Clinic~Jacksonville here is the link to their appointment request page.
http://mayocl.in/1mtmR63
You’ll find the phone number for the Jacksonville campus. A simple phone call will get the ball rolling. The coordinator on the phone will be able to direct you to the correct department. Or if you prefer there is an online link on that pages as well.

Do you see a local provider for your LV? It isn’t necessary but it can help securing an appointment with a referral from your physician.

REPLY
@loribmt

You’re most welcome. I wish there were definitive answers for you because I know that feeling of uncertainty too. So many unknowns with this virus but one fact is that the vaccine works in preventing and slowing down the advancement of the virus and milder breakthrough cases for people who have been vaccinated.

I found some previous discussions on LV that you might find interesting.

Livedoid vasculopathy https://connect.mayoclinic.org/discussion/livedoid-vasculopathy/
– Treatment options for Lividoid Vasculopathy (LV)
https://connect.mayoclinic.org/discussion/i-am-looking-for-outcomes-in-the-use-of-blood-thinners-in/
– Livedoid vasculopathy and thrombocytosis: related? https://connect.mayoclinic.org/discussion/livedoid-vasculopathy-1/

Will you let us know what you decide to do? We all learn by sharing on Connect.

I’d like invite a few members who have LV into this discussion.

Hi, @yoan02 @zenk @ruthnz @curtismiller, have any of you received the Covid -19 vaccination? If so, did you find any worsening symptoms with your LV? @ykh128 would be interested to hear about any reactions you might have had to the vaccine.

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Hi, in NZ we only have the pfizer vac and I have never considered having it. For me the answer is a no. I've had one AI skin disease, Lichens Sclerosis, for 20 years. Since I developed LV in 2019/2020 I've also had Leukocytoclastic Vasculitis LCV which is similar – you get a huge large rash on your legs (to the top) and some of them turn into ulcers and are just as bad as LV. I also had two occasions of Scleritis (eye weird thing). Since April 3, from a spot on my leg, I have a huge raw mess there that I'm still trying to get under control. Right now (3rd month) I'm seriously not eating anything on anyone's allergy list. Since 2019 I've eliminated all chemicals from my life, and now am also taking supplements to try and reverse my immune system out of this despairing condition and make it function properly. So, the V is a no while I do this. Luckily here in NZ we have very few cases, they are all in managed isolation and the chance of my catching C19 is extremely low. I am also weary of being near people who have recently V'd, Reports on women's groups I'm on, report than even without the V if you have contact with those that have had the V there can be disruptions to menstrual cycles, old women and children spotting/menstruating. So I'm staying away from those people too. Luckily I'm retired and don't have to go to work. Having the V doesn't stop you from getting C19 or carrying it. it may lessen the severity. We all have the freedom to make an informed choice.. Everyone is different and has got to this place LS, LV, LCV and whatever other AI's you might have on a different journey. There is no one size fits all. Only the future will tell how safe it is.

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@msmerry

Hello zenk and so many other familiar names. I remember your handle from the first time I was correctly diagnosed after 7 years. You were so helpful. And you were right it just keeps coming back. I have been taking Trental for the last 7 years and still having some major outbreaks. I am in one now, both feet and for the first time on one leg just above the ankle area and very close to the bone so it is excruciating to say the least and just won't heal. So, my questions for the group are two fold. Should I still continue with the Trental while the ulcers are active and the other is has anyone tried oral sulodexide? I recently saw a report or study and there was significant improvement. I am in Canada and we cannot get a lot of meds that others can so any help on this would be awesome. I will see my GP in 2 weeks and it looks like the sulodexide is available in Canada.
Crossing all my T's before I see him.
Merry C.

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Hi Ms. Merry, Sorry about your current trouble with LV. Your post is interesting , I saw this article in the annals of dermatology re:Sulodexide. It was a Korean study by CH Song in 2020. Maybe you can find it on the internet . It seems to work like a blood thinner. Do you take xarelto now? I think a vascular doc or maybe a dermatologist would know more. I'll keep looking. I wish I had seen you post sooner. What did you GP say about you ulcers? Take care ,I have thought of you over the years. I have had 11 yrs. now of surgeries and skin grafts ,difficulty walking and lots of pain , but just now am in a good spot with no new sores for 6 mo. I dread going into cold weather. Keep in touch.Zenk

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