Livedoid vasculopathy

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

I was with Livedoid Vasculopathy in March of 22. I had been dealing with painful ulcers on my lower legs that would not heal. I had taken 2 iv's of Rituxin for my RA, I had a reaction to it, severe pain, itching and rash. I was hardly able to get out of bed. My Dr sent me to Mayo Dermatology, they diagnosed me right away. I also have APS and Seronegative RA I am on prednisone, Eliquis, Methotrexate. Plaquenil and Leflunomide

Went to half dose of Eliquis and my feet started to hurt like they did before. Back on my full dose and are getting better. They hurt and burn, but at least the swelling has gone down. I still have days that I can hardly walk, and the fatigue, always tired and weak

Hi Angel1234...and I am also sorry I did not see your post earlier. And I am also sorry you are having to deal with this like the rest of us. In the very beginning I was so hopeful that after they put me on the Pentoxifylline I would be good to go. I was for a few years and that was wonderful considering I had had two huge outbreaks. I just say huge because of the size of the wounds and the length of time trying to deal with it.
But as most of us know, there is only a remissive state for each of us and how long we get in unknown. I think every time I have gone into the remission I get so excited that I can walk and wear shoes I forget the intensity of the pain. I think maybe that is a good thing knowing now that the return can be around the corner so to speak.
I wish with all my heart they could get to the bottom of this. I saw a visiting Dermatologist to my small hospital and he thought it might be auto immune related but pretty much every test was good. I have a DVT and I understand this is part of this and he did as well.
As to any compression...NO! Too painful and how do you get those things on over large...baseball size open wounds anyway. No this is not venous to my understanding anyway. Usually there is no pain with a venous ulcer and that is where so much of the confusion came in. Also the Doppler tests were all clear with a solid pulse in my foot.
I have tried the Manuka honey and silver dressings but the pain increases and it is unbearable so we don't try those anymore. I am actually keeping the larger one very dry even changing it every day and it has helped. I am starting to see some pink skin as it fills in. ( It was very deep and long) The ridge around the wound is also becoming less prominent to the eye and to the touch.
I have only had to go on anti biotics I think 3-4 times in my 17 years so that is a plus and I have also done most of my own dressings. I am seeing wound care now...just once a week to have more eyes on things to monitor it. The nurses also act as a go-between for my Dr.
I do not think I could get the Rivaroxaban here in Canada but Pentoxifylline is similar as in a blood thinner. My question is can the body become immune to the medication and stop working? I wonder being as I have had two+ outbreaks since being on it. And is it a good idea to stop taking it periodically if that is the case.
Maybe someone here can help with it. Anyway, it is very nice to meet you...sorry you have LV and I look forward to hearing from you. I think it helps each of us if we can share with each other. At the very least we know we are not alone in this journey.

Merry C7

Hi Aimeenc
I am so sorry that I did not see your post sooner. I know just how you feel as those around me just don't understand nor do they 'get' that there is no cure! I have been in another nasty outbreak since COVID hit and painful doesn't even touch how raw this can be.
I got out my crutches to help me shift the weight off my feet so I could try and stand for more than 30 min. Helped a little but this one is just not letting go. I was put on Pentoxifylline years ago after I was diagnosed. I did finally see the ulcers close but they came back hard and fast.
There is no way to tell it other than by just being there for each other and reaching out with hugs and understanding of what each other is dealing with. Being alone and lonely in this disease is really hard so we need each other more than ever.
I hope you are doing a bit better now. I am still not but hopeful...okay lying...frustrated that I seem to be going backwards! 🙂 Please reach out if you feel like chatting or need a hug. Not far away...
MerryC7

Hi Alejandro. I read your post above and hope you are still here and doing well. My ulcers on my feet and ankles also get to the same size as yours. I had not seen anyone else with them this big so wanted to reach out and say hello.
I don't post photos as they are pretty gross and not everyone can handle them. I was misdiagnosed for years...could be 8 or more and it was hell. I don't need to tell you how that is when your foot can't even bend and just walking is difficult.
I know there is no cure, but here at the Mayo Clinic they seem to at least look at other ideas or try new things for us.
I live in Canada and so far only have found one other on the other side of the country. We are small but vast between large cities and other provinces. Like a state if you are in the US.
Would love to hear from you and if you are doing okay etc. I am in another nasty outbreak which has now lasted over 21/2yrs. The pain is the hardest to deal with.
Sending a virtual hug your way because when you have something like this we all need one.
Merry C7

Ange, I have had good results with Rivroxaban since 2010 .
When I do get a serious ulcer that stalls out and does not heal, I get a skin graft put over it to heal it and though it is major surgery I have an excellent plastic surgeon who oversees the ulcer untill healed completely. It seems you have little choice than blood thinner ,hope it works for you I take 15mg daily. Zenk

Good Morning, I also have this rare condition, it can be very painful at times, I have had it since 2020 just after lockdown, not sure why it happened but it did, it started with sores on my feet and lower legs, not bad to begin with but as time progressed it got worse. I went to my doctor and they then sent me to dermatology at Treliske Hospital Cornwall. The Doctors really had no idea what it was and the cause, they took swabs and blood tests and a couple of biopsies, but to no avail. I was given Dermovate cream and Dermol 500and 600 as they thought it was venous eczema but this irritated the skin. I was also told to use compression stockings which also caused more pain with the compression. I was given Prednisolone and antibiotics and the open areas were dressed at my surgery, this went on for weeks possible diagnosis was Cutaneous Vasculitis. I on two occasion ended up at A&E as I had breakouts over a weekend with weeping sores and very painful.
August 2021 the likely Diagnosis was Livedoid Vasculopathy and I was weaned off Prednisolone and put on Methotrexate, but coming off the Prednisolone my condition flared up and was put back up to 30 mg again, eventually I weaned my self off, it was a painful and uncomfortable experience.
12 months ago I was put on Methotrexate and now I am on nothing as I was still having breakouts and the medication was not working, so the Doctor and I both agreed to stop all medication. I was fine for a couple of weeks and the sores started again so back to my Doctor and I was given antibiotics for a 3 week period, there was some improvement but when I stopped using them it started to break out again. The Hospital has prescribed Rivaroxaban 20mg a blood thinner but I am reluctant to take it until all medication has left my body.
At present I am dressing my open wounds with Manuka honey which seems to help the healing process, long term I will have to wait and see.

@aimeenc, please accept my belated welcome. I think other members with LV like @cwhorton @msmerry @zenk @patientrea @cleverrover @merrycat will empathize with your statement "I've really been struggling lately & my family just doesn't understand at all what I go through on a daily basis."

You sure have been proactive in forming a team of specialists to be on YOUR team. Good for you.

For your question about Medicare covering a wheelchair or scooter, I suggest callling Medicare directly or getting help from a social worker to navigate the insurance maze.

I'm so sorry to hear that your husband, your rock, and his support is waning. It sounds like both of you had high hopes that LV would get better and normal life would return. Reality may have different plans and acceptance is really hard -- for both of you. Might he be willing to seek counselling with you from a social worker or qualified marriage counsellor?

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

Merrycat, So glad you got blood thinning treatment and wound care at Mayo. Your sharing of this info helps me confirm that I am getting the most up to date treatment also. I always hope that the reason for and then the treatment for the small vessel blockages will be found for us with LV . In the mean time what ever keeps us on our feet is welcomed. Thanks, Zenk