Hello! I am new to the group as I have just been diagnosed. I am 29 and I have been reading about the disease and treatments. It seems like it’s a lot of trial and error. I am hoping to hear from other people with this disease and maybe get some tips on treatment and overall mental health when dealing with Livedoid vasculopathy.
Hello! I am new to the group as I have just been diagnosed. I am 29 and I have been reading about the disease and treatments. It seems like it’s a lot of trial and error. I am hoping to hear from other people with this disease and maybe get some tips on treatment and overall mental health when dealing with Livedoid vasculopathy.
Welcome, @jojo4k.
There's a lot to absorb when you've just been diagnosed with livedoid vasculopathy. I'm glad that you reached out to others living with LV on treatment tips and sharing about coping, not only with the condition, but the mental and emotional well being that goes along with it.
I have not had any medicine given besides topicals. I have tried steroid creams and I’m taking a baby aspirin. I had a really bad breakout with 8 sores that have healed. I am really hoping I can get medicine that might prevent a bad breakout. I know blood thinners seems to help. I went to Mayo Clinic Arizona and they want me to meet with hematology before they give me medication. I have been depressed because of the pain now that it is better I don’t feel as hopeless. I was really wanting to talk to other people with this disease to see where they are at in their journey and how they stay positive. It has affected my relationship and I had to take a break from work.
Hi My name is Angel and I am doing a lot better, I am taking Rivaroxaban 20mg I have been taking them now for nearly 2 months, I think they are being to make a difference, I have had no new breakouts, for a few weeks. I am still dressing the main 3 ulcers with Iodine dressing over night and then letting them breath during the day. I am struggling with not been able to wear any shoes as the weather here in the UK is getting colder sometimes flipflop are not ideal. I see some people have mentioned diet has made a difference can you share what you have changed and what you are eating, I have no support here in the UK and I seem to be the only case at my doctors. I still take painkillers as sometime the pain and burning sensation is unbearable. I am so grateful to this group as its been helpful and I don't feel alone anymore. Angel
Hi, I just am starting my journey. I had 6 viles of blood drawn on Friday. The sores and swelling are so painful. I was told that this condition is rare.
Hi, I just am starting my journey. I had 6 viles of blood drawn on Friday. The sores and swelling are so painful. I was told that this condition is rare.
I'm in NZ and had fantastic free govt hospital wound clinic treatment for the LV and finally recovered. I only ever took Asprin and stopped that when I recovered. BUT some months later I developed Leukocytoclastic Vasculitis LCV which presented as similar to LV, but with an unknown cause. One day a Silver impregnanted cloth treatment I had used very successfully for both turned my life upside down again, and I had developed contact vasculitis. This meant I could put no dressings on my leg/s, ended up in hospital and after some months it finally cleared up and I have stayed clear since Nov 2022. I am very careful about what I don't eat, mostly eat cooking from scratch, don't use any chemicals on my skin and take some supplements. So far so good.
Connect
Connect
Like
Helpful
Hug
Hello! I am new to the group as I have just been diagnosed. I am 29 and I have been reading about the disease and treatments. It seems like it’s a lot of trial and error. I am hoping to hear from other people with this disease and maybe get some tips on treatment and overall mental health when dealing with Livedoid vasculopathy.
Welcome, @jojo4k.
There's a lot to absorb when you've just been diagnosed with livedoid vasculopathy. I'm glad that you reached out to others living with LV on treatment tips and sharing about coping, not only with the condition, but the mental and emotional well being that goes along with it.
I moved your post to this existing discussion:
- Livedoid vasculopathy group: Checking in, how are you doing? https://connect.mayoclinic.org/discussion/lividoid-vasculopathy-mayo-group/
I did this so you can read the previous posts and connect easily with other LV-ers like @angel1234 @zenk @msmerry @cwhorton @merrycat @aimeenc @ruthnz @ykh128 @yoan02 and more.
You may also be interested in these related discussions:
- Treatment options for Livedoid Vasculopathy (LV): https://connect.mayoclinic.org/discussion/i-am-looking-for-outcomes-in-the-use-of-blood-thinners-in/
- What is the best dosage of Xarelto for Livedoid Vasculopathy? https://connect.mayoclinic.org/discussion/hat-is-the-best-dosage-of-xarelto-for-lividoid-vasculopathy/
- Livedoid vasculopathy https://connect.mayoclinic.org/discussion/livedoid-vasculopathy/
Jojo, what treatment has been recommended for you? What helps you care for your mental health?
-
Like -
Helpful -
Hug
5 ReactionsI have not had any medicine given besides topicals. I have tried steroid creams and I’m taking a baby aspirin. I had a really bad breakout with 8 sores that have healed. I am really hoping I can get medicine that might prevent a bad breakout. I know blood thinners seems to help. I went to Mayo Clinic Arizona and they want me to meet with hematology before they give me medication. I have been depressed because of the pain now that it is better I don’t feel as hopeless. I was really wanting to talk to other people with this disease to see where they are at in their journey and how they stay positive. It has affected my relationship and I had to take a break from work.
Hi My name is Angel and I am doing a lot better, I am taking Rivaroxaban 20mg I have been taking them now for nearly 2 months, I think they are being to make a difference, I have had no new breakouts, for a few weeks. I am still dressing the main 3 ulcers with Iodine dressing over night and then letting them breath during the day. I am struggling with not been able to wear any shoes as the weather here in the UK is getting colder sometimes flipflop are not ideal. I see some people have mentioned diet has made a difference can you share what you have changed and what you are eating, I have no support here in the UK and I seem to be the only case at my doctors. I still take painkillers as sometime the pain and burning sensation is unbearable. I am so grateful to this group as its been helpful and I don't feel alone anymore. Angel
Hi, I just am starting my journey. I had 6 viles of blood drawn on Friday. The sores and swelling are so painful. I was told that this condition is rare.
-
Like -
Helpful -
Hug
1 ReactionWelcome, @bronte, I'm tagging a few members like @zenk @angel1234 @msmerry @cwhorton @merrycat @aimeenc @ruthnz @ykh128 @yoan02 and others to join me in welcoming you.
Livedoid vasculopathy is a rare vasculopathy. Are you getting treatment and guidance on caring for the wounds?
I'm in NZ and had fantastic free govt hospital wound clinic treatment for the LV and finally recovered. I only ever took Asprin and stopped that when I recovered. BUT some months later I developed Leukocytoclastic Vasculitis LCV which presented as similar to LV, but with an unknown cause. One day a Silver impregnanted cloth treatment I had used very successfully for both turned my life upside down again, and I had developed contact vasculitis. This meant I could put no dressings on my leg/s, ended up in hospital and after some months it finally cleared up and I have stayed clear since Nov 2022. I am very careful about what I don't eat, mostly eat cooking from scratch, don't use any chemicals on my skin and take some supplements. So far so good.
-
Like -
Helpful -
Hug
1 Reaction