Livedoid vasculopathy

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.

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?

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 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 to everyone and Happy New Year to you all. I am currently in an outbreak which is showing signs I have never had before and now into my 3rd year. I have one on my ankle where the others were but this time my foot is swelling so badly my toes do not touch the floor and my arch is swollen and the skin forming large blister like areas...I say blister-like because they look like a blister but do not act as one. There is no fluid in the pocket. It just forms a hardened area that is 'punchy' to the touch.
They start to peel off as well as me peeling them. I have never seen this happen before and the pain is relentless with raw skin. There is also swollen pockets just below the ulcer area...I guess under the ankle. The pain feels like it is coming from the large ulcer. (which is trying so hard to heal and I can say it is not nearly as deep which is hopeful)

Any Drs I have seen have never seen anything like this, including my GP. All that is being done is pain meds and Trental 3 times a day. Just an added note, I am in Canada and we are restricted to a lot of meds. There was one Dr. who indicated that it may be autoimmune related but that was as far as things went. ( He was a visiting Dr. to our small hosp.)
So, today I am reaching out to see if anyone else has had anything similar happen in a break out with the arch of their foot. Or anything new that they have found to help get thru this. I'm sorry but in my 3rd year I am starting to get really frustrated. Tears come easy with the pain now...in part due to being so frustrated with the length of time I think and no solutions.
Thanks in advance for any help or ideas anyone might have. Huge LV (((Hugs))) coming your way.

MsMerry