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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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?
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I take 2 regular aspirin a day for clotting control, and Aleve for pain control in the evening.
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Hi Shiela, Just wondering if you would benefit from a more potent blood thinner. Aspirin is not enough to get oxygen to the wound. Maybe just a trial on something like Xarelto would be a thought. Also, some wound care studies have suggested the an eye drop called Timolol Maleate , your doctor would know what it is, placed on the ulcer a few times a day has been shown to improve blood flow to the wound. The drops are a prescription but are not expensive.
Wishing you better treatment, Zenk
Thanks for the info on the eye drops! I will see about the timolol Maleate. If I try it I will have to test it on my skin first to see if I have a reaction to it. I have a number of allergies which complicates things.
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 Steph! I have not been diagnosed with LV but I have been struggling with symptoms identical to what has been described in this chain for the last 10 years. I am 29 years old. I got a blood clot and was diagnosed with activated protein C resistance at the age of 19. At the age of 23, a previously very painful chronic ulcer on my right ankle went through a phase of being extremely itchy. In fact, the itchiness spread across my whole leg and got so bad I struggled to sleep. This was treated successfully with cortisone cream and by wearing a compression sock. I was treated in Switzerland. It took several months to heal but the good news was that the scar on my ankle got less painful than before the itchiness. I don’t know why. With regards to birth control, I used a copper IUD for five years since I cannot use hormones. Hoping that you will get rid of the itchiness soon, if you haven’t already!
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
My Dermo yesterday changed my meds from 300 mg Aspirin a day to Xarelto. I hope it makes a difference. I am also doing a full AIP Auto Immune Protocol food regime to try and knock this thing on the head
Hi Ruth, So good you are trying Xarelto. What is the status of your Ulcer right now? Would love to hear how things go and also more about the autoimmune Protocol food regime. Zenk
I have been struggling with LV since 2011. I have active ulcers since May last year and no cure is helping. I became resistant to Xarelto and to Fraxiparin injections. Since 10 days ago I have started taking tablets Sildena (which is known as Viagra) because I have read it in an article that it helped heal LV ulcers successfully, so I told my Dr and he decided I try this. Started with a small dose 12,5 mg 2 x day and now increased to 25 mg 2 x day but seems it's not going to help for me because I notice new ulcers coming up every day! So am thinking now to undergo for Hyperbaric Oxygen therapies.
Has anyone of you tried HBO therapy? Has it worked for any of you? Looking forward to hearing from your experiences.
Stay healthy 🙂
MY LV started in Jan 2019 and I know many of you have been dealing with this for many years, sadly. i have one stubborn ulcer hole left on the top of my left foot above the arch. My right leg also has a stubborn ulcer hole on the outside edge of the foot. One of the original big ulcers is very slowly improving, BUT I got a new shallow ulcer above it where the skin just sloughed off and two other similar areas nearby that might be from the paper tape, or not, not forgetting the new spot hole on the back of the right leg calf. In January when it started I had 12, so am now down to 5.
I already had one AID and since 2002 haven't eaten gluten, sugar and deadly nightshades. When I eat those the skin flares into itch/burn/splits so at Christmas, Easter and other festive times when the temptation is too great !!!!.
Anyway now I have also cut out legumes, dairy, eggs, alcohol. For some years I haven't used any chemical product on my skin or hair, I use perfume free laundry product, good olive oil only, and hypo-allergenic toilet paper.
There are two good books on AID protocol which I am sort of following as best i can.
The Autoimmune Solution by Amy Myers
healing Autoimmune Disease by Sandra Cabot
Hi Eva, I had HBO treatments in 2010 and 2018 for my LV . The treatnments were very helpful in healing very severe open ulcers. Due to the fact that Medicare does not pay for HBO for LV patients unless you are diabetic I could not afford to continue. HBO is a very good treatment for LV. It is one of the best ways to get oxygenated blood to the wound. I hope you can try it. Zenk
Thanks for the info on Autoimmune solutions. Will take a look. Good Luck, Zenk
Hi everybody! I just heard about a new drug that I'm going to ask the people at the wound center about. It's called Vasculera-diosmiplex 630mg and from what I've read it could be the light at the end of an 8 year long tunnel! Do your own research, don't go by what I think or say but I'm hopeful that it will Finally cure me.
Please let us know how this works for you. Good Luck, Zenk
Thank you for your replay. I appreciate your prompt replies always. I started with HBO treatment and had 5 treatments until now but don't feel/see any changes yet. My right ankle is still swelling and the ulcers are still the same. I am planning to take at least 20 sittings in the HBO for 1 hour. And am taking 1 xarelto of 20mg daily.
Can you recall how many HBO sittings did you have and after which one did you feel any better?
Thank you and regards,
Hi Spence I take it you have Livedoid Vasculopathy/Vasculitis? Do you
recall the name of the disorder your Dr was testing for or the name of the
test? Thank you.
I'm wondering if this thread or another is still active. I've been checking on Mayo sites, but have found nothing. Thank you.
I had to change back to Aspirin within a day. The Xarelto made my nose bleed
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