Livedoid vasculopathy

I was diagnosed in March. Since then I have had a severe outbreak, followed by a bout Raynaud phenomenon in my feet. I swear that hurts worse than the ulcers on my legs. Has anyone else had this issue, if so how and what made it better. It’s to the point that I have trouble walking and keeping my feet warm. I live in Florida where I sit inside because I am to cold to go anywhere.

Hello! How's everyone doing?? I'm so happy to have found this group as I've really been struggling lately & my family just doesn't understand at all what I go through on a daily basis. I know you are all too familiar with it unfortunately and thought I'd reach out for help & advice.

To tell you a little bit about myself & my LV background....

I was diagnosed with LV by the Mayo Clinic about 8 years ago (2014.) Like most of you, I struggled with the illness for quite some time before finally being diagnosed with "
LV. I went from seeing my local internist to local dermatologist to local rheumatologist to local hematologist to specialists in Indianapolis (3hrs away) & then more specialists at the University of Chicago (2 hrs away!) Each did their own set of skin biopsies (fun, fun.) Most were inconclusive, but the specialists at the U of C said the biopsy showed Cryofibrinogenemia. My ANA & other autoimmune labs were high but didn't point to a specific diagnosis so my official diagnosis was Cryofibrinogenia with unknown autoimmune response. So they first put me on high dose steroids of course & when they only helped me to gain 60 lbs in 2 months & be crabby all the time, they decided to wean them off & try plasmaphoresis instead. And after 7 weekly plasmaphoresis treatments I was still in the exact same place as when I started, so we decided to drive the 14 hours & spend a week in Rochester at the Mayo Clinic. And thank God we did because they were finally able to diagnose the LV. But as most of you know, getting a correct diagnoses is just the beginning... finding a dr & treatments that work is the where the battle really begins!!

I honestly think my drs ordered just about every LV treatment possible over the last 8 years, but this is what has worked the best for me....

I see a podiatrist/ wound specialist at one of the local hospitals every week. The only treatment we've found to actually heal my wounds is by having Epifix grafts (or other skin substitutes) applied to my wounds each week until healed & staying on strict bedrest (usually for 6-8 weeks, but it's taken as long as 12 weeks before) while having the grafts applied & until the ulcers are at least scabbed over. Even after that i'm only allowed to be up on my feet for 30-45 mins at a time before sitting w my feet up for a good hour or two before I can get up for another 30-45 mins. Talk about a HUGE lifestyle change! I used to love walking & was never much of a "sitter" before all this!

To help PREVENT new ulcers from forming, I see 3 other doctors...

First is Dr. Onajin. She's a dual specialist (dermatologist & rheumatologist) at the U of C and did her fellowship training at the Mayo clinic diagnosing & treating other LV patients & patients with similiar diagnoses. She's amazing & I feel so blessed to have finally found her!! Actually, I feel quite blessed to have finally found a good team of physicians that actually listen to me, are extremely knowledgeable, but are honest about never treating an LV patient before, and take the time to research it & seek out other physicians who may have treated it before. It only took me going through about 100 other doctors first though!! (okay that may be a slight exaggeration but sure feels like there was at least 100 others!! :))

Dr. Onajin has me taking Trental (pentoxiffine) 3x day, Eliquis 2x day, & Cellcept 1500mg every am & 1000 mg every pm. I also take cymbalta, gabapentin, methadone, advil, & occasionally norco for the pain, vistaril as needed for the intense itching, zofran as needed for nausea, & flexeril as needed for the intense muscle spasms in my foot that causes my foot to flex upward violently & "scrunch" up my wound that starts at the base of my toes. OMG it hurts like bloody hell!!!

The last 2 doctors in my team are my hematologist to manage the blood thinners, labs, & pain meds and my internist who tries his hardest to oversee it all! He mainly manages my ADD meds and cholesterol med & labs (this was something my drs had initially overlooked bc my cholesterol was barely even "borderline high" & I had plenty of "good" cholesterol. But dr. onajin pointed out that any way we can lower the chance of my blood vessels getting clogged up by lipids, calcium, & plaque is worth doing to make more room for the small clots to hopefully flow through
& not always get stuck. And believe it or not, it's actually made a significant difference!

Since I started this new regimen about a year ago I haven't had any NEW ulcers form. But I do still have a very stubborn ulcer on the top of my left foot that actually includes part of my big toe & the one next to it (& hurts like crazy, esp when i walk bc i have to bend that area.) I've had so many wounds in that same area that I've lost count & now it doesn't take anything for it to start breaking down- even just the tiniest bit of swelling will do it sometimes- & it's soooo difficult to heal since most of the skin in that area is so scarred up.

I've yet to have a time in the past 10 years where both feet are healed at the same time & I feel like i'm going to lost my mind if I don't get some sort of break/small remission period... just something very soon!! Even for a day or week! Just so I can take my kids to the park & play tag with them or to the beach or pool & actually be able to go swimming with them! They're growing up so fast (10 & 12) & can't even remember a time when i didn't have this damn illness.

My question to you guys is has your disease affected your marriage & family & how so and what did you do about it?? I feel like my husband (whose been my solid rock this whole time & had to take 2 jobs bc i used to be the breadwinner but had to go on disability) is thinking about leaving me as he can't imagine doing this for the rest of his life. We always kept each going by thinking that I'd be healed soon & we could go back to "normal." But i think we're both realizing now that this is our new "normal" & life will never be the same.

Last question... for those of you on medicare, do you know if they'll cover part of a scooter or auto wheelchair with a dr order?

Sorry for the long winded message!!! Just thought it'd help if you knew a bit about me & what I've been through and what I've found to help me as you may find it useful as well!!

Take care & God bless,

Amy
47 yr old mom of 2
LV patient

I'm on Eliquis also. It's causing SEVERE muscle spasms everywhere 2-4 times every hour, all day and night. I've never had an issue with any medication but it has to be the Eliquis. It was a very sudden onset. Within a week of being put on it I had the most bizarre onset of neuropathy (numbness) in my toes. I'm young (59 y/o) and besides my episode of Atrial Fib (now resolved for 3.5 months) I've never had any health issues. They've ruled out other causes. I'm also having twitching of muscles and a feeling of general weakness. This is very remarkable because I could formerly unload our truck with a pallet of 50# horse feed bags and stack them easily. Now I feel weak. But the muscle spasms are really the worst of it. They are all over my body in weird muscles but have even had them in my hamstrings and it's brought me to the floor screaming. Your muscle spasms may be from the Eliquis?

Hi guys,I am writing from Serbia,we have no groups,forums,or any knowledge about this.It started a long time ago as something that looked like a nasty rash,but the skin was also bumpy.It was in summer,I was standing a lot,it was also very warm,so I thought that it was a reaction to some med together with the sun,standing...The next year I was ok,but I was also not on my feet a lot.In 2016 I had my first ulcer,a small one,together with a lot of red spots that looked like small blood vessels,out of those spots more ulcers appeared.Prior to everything I had a really bad swelling of my ankle,left one,and under the skin in my foot,right under the ankle it was really dark,almost purple.I went to the vascular surgeon,had an ultrasound,and she said that everything was ok with my veins. Last year I was diagnosed with vasculitis and prescribed glucocorticosteroides,they helped and I was ok until this august.So,I had to stand a lot,my ankles got swollen and a week later I had ulcers open,it looks like a small hole in skin,I tried the same terapy again,did not work.I have to say that I was on my feet for 12 hours a day,and it was really hot.Last week I was diagnosed liveroid vasculopathy,my new doc took me of the steroids,I drink aspirin,trental, diosmin and I have to treat ulcers with Atrauman ag compresses.It hurst a lot,he also said that I have incompetent cockett middle perforator and it is causing all of this.So many unltrasounds later,one doctor just touched my leg and he knew where to look and what to look for.I am in pain,my leg hurts,the ulcers hurt,and I think that this could have been prevented because I was going to doctors,paying a lot,I was telling them that it has to be connected to the heat and standing and they were just asking stupid things like,did you shave? Or,you were wearing uncomfortable sandals and this is a blister, things like that.I swear,most doctors are brainwashed and have no capacity to use logics.

Hi Ms. Merry, Have you been able to try blood thinner medication ,like Xarelto? I assume your doc has checked to see if you have venous insufficiency in your swollen foot ,like an ultrasound test to see if you have blockages in that leg. You can have skin changes in your foot if the blood is not getting to the dermis . A dermatologist would recognize it but a vascular surgeon would know for sure. Please let us know what you find out. 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