Mayo Clinic Connect
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.
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So just an fyi I have started a group page on face book called Livdoid Vasculopathy support, for those of us on Facebook. There are people from around the world in this group. We discuss our stories and help each other out! We'd love to have you on there too!
Liked by steph1567
Thank you. My hat is off to both you and my daughter. LV is definitely not for the faint of heart. My daughter, Angel, has had three of the ablations done at Kaiser Permanente in Oakland California over the course of the summer. The last one was just done three weeks ago. I am happy to report she is doing extremely well. I shared your post with her and she typed this reply for me to share."Stripping is how they used to do it. Essentially, the goal in both procedures is the same….
To stop blood from flowing through inefficient veins, and cause it to reroute to veins that work better . That being said, how do we keep these efficient veins from going bad? The answer is compression while upright and elevation when you're sitting.
Only time will tell if the laser ablation has proven to reduce the reoccurrence of the ulcers. The only thing I know for sure, is that compression helped me heal and at this point, the stockings give me hope that I'll be able to continue standing behind the styling chair ."
All the best to you msmerry
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I am so happy that this is working for your daughter and thanks for sharing her post. Compression is not an option for me as the ulcers are too large and even a sock or the slightest touch sends off deep pain signals. It was after this procedure was done that they discovered it was LV and not a venous problem. The ulcers keep coming back to the exact same spot on my foot/ankle. I am out of remission again and can manage only about 4 hours of being up or sitting and both feet again and the same areas with what looks like a new one busting loose. ( Gotta keep a sense of humor on this ) 🙂 Elevation, I try to do consistently throughout the day. I did have a DVT and I now know that this is also an indicator. The other thing that was noted about a year before the first time it happened was my feet were turning bright red and swelling. ( a client pointed it out) I had had this happen when I was in my 20's and they couldn't figure it out or why it was so painful.
They made mention of the fact that LV is very rare and that most people are misdiagnosed for at least 5 years when it first happens. I for one can attest to this. Anyway, I just wanted to get back to you and apologize for being so slow in replying. I had not been here in a bit and not knowing too much about forums forgot to check in. Happy Thanksgiving coming soon for our American neighbors! I hope it is a wonderful time for all.
I do have to say thank you to the two wonderful South African Surgeons who took it upon themselves to do more. Unfortunately, they are no longer in my area for further follow-ups. I am grateful that one of them said all the others (specialists I had been sent to see) were wrong and did the Biopsy and sent it away. That takes courage to do.
I am sincerely grateful for this forum and any others I have yet to discover. No one can know or relate to this disease unless they
a) have it
b) live with someone suffering from this…
Keep on researching and sharing when you can. Thanks to everyone.
Hi Ms. Merry, Sorry about your current flare. I always get the ulcers in the same places also . Feet and ankles, especially over boney areas. Evidently, the micro vessels in these areas are blocked by fibrin and oxygen rich blood can't reach the top dermis of the skin. Glad you are seeing you GP next week. If you haven't tried Rivroxaban 15 mg. yet it is surely worth a try. Once I have a very deep and painful ulcer good wound care is essential and I have had to be on MS contin for pain especially at night. Topical cream with Ketamine at least 10% and Gabapentin in it was a life saver last time around. I finally had to have a skin graft over my right ankle in sept. My foot was in danger and they had to operate. Maybe Rivroxaban won't be as expensive in Canada. Please let me know how it goes at the doctor. Thinking of you,stay strong. Zenk
Not sure if this is still an active blog.
I'm 23 years old and was diagnosed with this a few years ago.
I'm wondering if anyone has the ulcers that itch extremely bad? Or if they have ever had a rash that spreads to their thighs, forearms, buttox, back and stomach from this condition?
Also, how bad is the risk for clots?
I am trying to be on birth control with estrogen for PCOS but I am apparently at too high of a risk because of this condition even while taking aspirin.
Hi Stephanie, Yes people with Lividoid Vasculopathy have reported having ulcers that itch very badly. I have had to put benedryl cream or spray on the ulcer or at least around it to stop the itching . I have not heard of a rash like you describe with LV. Check with a dermatologist for best guess. People with LV unless they have been diagnosed with a coagulation abnormality are not at risk for clots. Do you know if your blood clots abnormally? A blood test would tell. Blood thinner is the treatment of choice for LV ,so with your other condition , your doctor would have to determine the safety of blood thinner. Keep in touch, Zenk
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I do not have a history of clots. I take an aspirin daily as directed from the dermatologist.
Hi steph, Did you find out what was causing your rash? Zenk
Hey everyone! I first want to say that who ever is dealing with this, I am sorry and I am feeling the same frustration.
I started showing symptoms of this about 3 years ago or more. I first remember being diagnosed as a rash of some sort from shaving. Then I was very sure it wasn't so my family doctor sent me to a dermatologist specialist. I was with her for 2 years and she tried creams, and everything. She tried a variety of medicines on me including methotrexate, and the last one was pentoxifylline. I tried all of these but nothing has really helped. It is on both lower legs/ankles and now it is spreading to my feet on the top sides close to the ankle bone.She had sent me to a cancer center that is in my town in Iowa and the blood doctor was very confused as to why my dermatologist sent me there. She ran tests and she told me I don't have cancer so she was confused as to why I was there. I gave up for the last 3 months. I do not know what to do anymore. I am 23 years old and I have had thyroid problems in my past, and I do have Grave's Disease, so I do not know if that would make a difference. I feel like my doctors sort of gave up because they did not know what else to do with treatment for me. Will you please get back to me… someone?
Hi ayy, tThe preferred treatment for Lividoid Vasculopathy is Xarelto which is a blood thinner. You must be sure that you indeed have LV. The diagnosis is confirmed with a punch biopsie near an LV ulcer. If your dermatologist did the biopsie, you should perhaps trial on Xarelto under your doctors care.Lividoid vasculopathyt is a vascular disease of the very small vessels . That is wehy blood thinning works well for many of us. Zenk
Is anyone still monitoring this group? I have LV and I am in desperate condition. Mostly, it is the chronic, excruciating pain for the last 5 years that has me profoundly depressed, exhausted and feeling as if the quality of my life has reached the point of diminishing return. I get flares 4 to 7 times per day that feel like a torch is being held to my feet. I have had the same open ulcers for 5 years. one on the top of each foot. I had 2 other ulcers that took 3 years to heal. I feel as if I am being tortured. Thank you for letting me vent.
I don't know if anyone is monitoring or not. I asked a question over 6 months ago and got no reply. I have had an LV ulcer on my ankle for 25 years. It has not healed in the last 4-5 years, and the pain, which seems to hit without warning, is like boiling water being poured on the ulcer. I take aspirin in the morning and Alleve at bedtime for pain. It dulls pain somewhat. When my ankle hurts I put my feet up and try to concentrate on something else (TV, games, book, etc) until the pain goes away. If I wake up and the pain starts I try to lie so that nothing touches the ulcer, and relax my muscles. I can not stand in one place for very long, as this aggravates the ulcer, and I can not walk or work moving around for more than a half hour at a time or I pay for it later in the day. It is depressing at times. Hang in there, you are not alone!
Hi,you're not alone!!Are you taking any medications?
Hi @robingayle and @prairiesmoke thank you for sharing your stories. Connect is a place where you can always vent and share your stories with people like you.
I want to thank @patientrea for responding to your post and I also wanted to tag @zenk as they may be able to offer you support.
To repeat @patientrea's questions, what medications are you on right now?
Hi Sheila and all, Are you taking any blood thinner? Xarelto or other blood thinners are the best way to treat the ulcer because it will allow for more oxygenated blood to get to the wounds. You probably need somebody in wound care to talk with, and maybe get more pain control. Zenk
I am taking 2 regular aspirin a day for blood thinning. I have been on warfarin in the past for blood clots in legs and lung. I have been leery of trying stronger pain meds. I am in a test study now with a new grafting material made from placental tissue. It has worked somewhat, but it is a slow process. I talked to my regular Dr. about Xarelto, but she seemed to think I was ok with aspirin as a blood thinner. I also have factor V Leiden, which aggravates the blood clotting. Sheila
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