Livedoid vasculopathy

Hi, imamom
I’m so sorry to hear about your daughter. It’s a devastating situation to be in, especially at her age. To answer a couple of the questions and to give some more insight, yes, it is an eastern medicine doctor that told me to test for uric acid. I had seen maybe a dozen different doctors around the US before and the only thing they could suggest was different types of oral or injection medicine. I am Indian, and the last resort we really had was to go to a naturopathic clinic in India. One of the doctors there had seen something like this before and recognized that you were acid may have been the cause so decided to test for it. I may be getting the numbers wrong but I think the normal level is 7 and mine was closer to 14. I don’t eat red meat because of my culture, but I did eat a lot of poultry, especially fried and not so healthy foods. I went on an almost purely natural diet for about six months before starting to introduce more lenient foods into my diet again. and by that I mean, vegetarian with a focus in a reduction in purines. For me, it was also important to cut out foods that had high fructose corn syrup, and other preservatives similar to that because those increased my uric acid levels. It’s been five years since the last time I have had an attack and I am able to do everything normally as of today.
I’ve attached 2 photos. One when it was at its worst, and another from just now

Welcome, @iamom It doesn’t appear that @victorarrow has been active since originally posting their comment in 2021. But they may still get a notification in their email if they are still signed into the forum.

However, there are other members here who have LV. So hopefully they can share their experiences for what has helped them.

I’m so sorry to hear about your daughter and her 7 years of trying to work through this! As a mother this has to leave you feeling so helpless and frustrated for her.

Is she being seen at a larger teaching/research hospital such as a university?

I am desperately seeking options for my 20-year-old with LV for almost 7 years. Xarelto showed zero improvement for her. Lovenox injections worked for a short time at the highest doses and then stopped working, plus her doctor said she couldn't continue at that high level. She has tried a gluten- and dairy-free, sugar-free, and elimination diet (except eggs)—none showing improvement. Can anyone chime in on avoiding dairy, eggs, and red meats and finding healing for LV? Has anyone tried Sulodexide with success? What about IVIG? Is IVIG clean and safe? Has anyone tried low-dose tPA? She just began the CHAP protocol but seemed to have an allergic reaction to the channel blocker (vasculitis-looking rash on her right arm that faded after stopping). Any other ideas? Thank you and blessings to all!

I am hoping you will reply, even though this is an older post. I have a 20--year-old daughter with LV, who has been suffering nearly 7 years. We have tried nearly everything including an elimination diet (excluding eggs). I have been reading recently about uric acid, TMAO, etc. I'm wondering who you saw to test uric acid and recommending diet? Easter Medicine doc? We can rarely find a doctor to recommend changes to diet. We have tried gluten and dairy free with no success. Blood thinners didn't work . (Xarelto first and then Lovenox provided temporary relief only at high doses - and then it stopped working). How are you doing today?

I (38 y.o. M) was just diagnosed with LV after both of my feet ulcerated during a heat wave this summer. Previously the livedo had been misdiagnosed as morphea, but a biopsy of the tissue near an ulcer proved it was LV. No indications of autoimmune disease or monoclonal proteins... still waiting on full blood work to analyze for for possible causes/mechanisms, but preliminary results indicate hypercoagulability. I just started daily aspirin and a pentoxifylline regimen, and have gotten several pairs of knee-high compression socks, but it is still too soon to see results. It sounds like the any more targeted medications will need to be selected after hematology results come back.

I've been essentially immobile for 5 weeks (< 100 steps a day because OUCH!). My ulcers are healing slowly, but I don't want to develop any other health issues due to being so inactive. Does anyone have any tips for getting exercise?

In addition to concerns about physical wear and tear on my feet, I can tell that my issues are triggered by heat. Does that mean I need to avoid vigorous activity? Or just make sure I keep cool while exercising?

Does anybody have experience with swimming? Does chlorinated pool water help or hurt? Do I need to wait until the ulcers close completely?

Thanks for the post. I will suggest my husband gets uric acid tested. Anecdotally, his reaction to high purine food (red meat, haddock for example) is very pronounced- pain at the site of ulcer under 1 hr after consumption; redness to periwound. An inflammation response that then peels. I can get it under control with betaderm 2 application in 24hours. But if one has large ulcers, wound management mantra is to consume protein to repair understandably. But patients need to be warned not to consume purine high protein sources if high uric acid concentrations help trip up platelet clotting in LV. It would make for a great Mayo Clinic Study for a diet challenge for LV sugfferes with high uric acid to determine how restrictive the diet needs to be. My understanding of purines is that even some plant based food (some of my go to's) are high - oatmeal, dried beans... I find it interesting you got help in India as curcumin seems to helpful in the cessation of the inflammation of epithelial cells problematic in gout and LV. Did you ayurvedic diet recommend specific levels of turmeric consumption?

Could you possibly ask your doctor to switch you to Xarelto? It is a blood thinner my husband takes for AFib.
Eileen

This problem is complex, rare and miserable. It is quite important to have a thorough evaluation for clotting disorders and abnormal proteins in blood by a hematologist as well as rheumatological conditions such as lupus, scleroderma, RA and MCTD by a rheumatologist so these associated conditions if present are treated. Associated Raynauds is a red flag for connective tissue disorders mentioned above. Anything that promotes venous stasis(high pressure and sluggish venous return) should be avoided (excess standing, crossed legs). Arterial vasodilators can be helpful to increase blood flow to the capillaries. Anticoagulants are necessary to prevent clots from forming. Smoking is forbidden! Aggressive treatment of wounds is important. Pain relief essential. Mental health support is critical. This is a valid reason to apply for disability as well if working is impossible. I sincerely hope that all of you get the best of care by compassionate, competent Drs!

Dear Ms. Merry, I think of you often and hope you are doing ok. I see that you are not doing well and even though I remember dark days of severe ulcers and the pain and sadness that comes with it ,the mind allows us to briefly forget some of it when we finally heal for however long that is. Please don't give up.
Do you have access to regular wound care near you ? Do you have access to virtual physician appointments . At least you could talk regularly to some one at Univ. of Toronto or some other medical school in canada . Maybe Mayo clinic in Rochester mn. would talk to you virtually . Merry, Do you take any blood thinner? I can't remember if you took Xarelto in the past. I continue to take Xarelto daily . I think it helps in prevention of ulcers for me. Have you tried Xarelto (Rivroxaban ) ? They prescribe it for me under prevention of deep vein thrombosis .
I sure wish you could start getting better . Does the Canadian health system pay for podiatry for getting you fitted for a shoe that you could walk in? I have used a soft shoe called Pedors that I could cut holes in them to acomodate ulcers where I could not stand anything touching them. Please keep in touch Maybe your GP will prescribe Xarelto off label for you to try. We are all alone Merry as really no friend or relative can do much about these health things. Keep in touch with any doctor you can. Your Friend, Zenk

I am so sorry for not getting back to you sooner @zenk Things just kept getting worse and here we are in 2024, and I am still in the same outbreak. Coming into 31/2+ years. I was fortunate to have found a Vascular Surgeon who took me on as a patient In August of this year. He honestly did not believe me when I said I had a Biopsy done, and it was Livedoid Vasculopathy.

Because I live in such a remote area, and I was a 2-day drive from this specialist, I was admitted for 6 weeks as they tried to help me. Both my feet were affected and for the first time I had an ulcer on my leg just above the ankle. The size of my ulcer on my foot was a 3"by3"by3".located on the inner ankle to the top area of the foot.
I had ultrasound tests done, and the right was good, but the left showed a vein issue, and it was removed in surgery. The only blood thinner I was on was the Pentoxifylline. It worked for a time but was not helping on this last episode.
I had 4 surgeries where they debrided all 4 areas and removed one vein from one leg. I asked the Dr. just before they took me into the O.R. if this is a vein problem in one leg, then why is the exact same thing happening to the other leg/foot. He replied... Good question. I don't know.

The next surgery was for a skin grafting on all the wound areas and another debride on the right foot. My ulcer was so large on my right foot that in order for me to walk due to the pain and size of the ulcer, my foot started turning inwards and is now locked. Walking is painful and difficult but getting any shoes on my feet is impossible. Flip-flops and a ballet style flat shoe is all I can manage. My foot will not bend at the ankle or move in a sideways motion.

Anyway, sorry for the long story here, everything was healing perfectly...they also used a suction therapy on me and I think that was key. The only problem was trying to walk. My foot is so crooked that it began pulling and stretching my skin, and the wound has now re-opened after 41/2 months.
I was given four choices...stay as I am, amputate, full brace ($6-9000) or surgery to reconstruct my foot.
Now that it has re-opened, I can do nothing until it heals again. Feeling devastated and alone. The vascular surgeon says there is nothing more he can do for me. I am so sad and feel like I am back to square one. At the very least I have my GP who says he is here for me.
So, Zenk I hope you are still here. This disease after 19 years is wearing me down with pain and now the disabled foot. And I have to say it is a lonely journey, so THANK YOU to you and everyone else with or without LV participating and sharing with others.
Living in Canada, I have found we are limited where help is concerned as well as medication. And for so many Drs. this is an unknown territory.
Hugs to all,
Ms Merry