Livedoid vasculopathy

Hi @cwhorton, welcome. Allow me to tag fellow members like @msmerry @ykh128 @yoan02 @ruthnz @zenk @patientrea @cleverrover, who have experience with livedoid vasculitis and can share their experiences with you and their tips for avoiding outbreaks and dealing with warm weather.

You also asked about what kind of doctor to see. Livedoid vasculopathy is complicated. At Mayo Clinic, experts work together from multiple departments to treat those with LV. You can read Cheryl's story here as one example:
- Surprise Diagnosis Spurs Learning Curve, Search for Help https://sharing.mayoclinic.org/2015/11/25/surprise-diagnosis-spurs-learning-curve-search-for-help/

CWhorton, have you consulted with a hemotologist and a dermatologist?

Yes currently have been seeing a dermatologist and hematologist not at Mayo and have an apt with a vascular surgeon. Thanks for tagging others with similar issues.

About 3 years ago I had what I thought was a bug bite on my shin, I couldn't get it to heal, finally went to the wound center. I developed other ulcers. After a few months they healed. I faithfully wore my compression socks. About a year and a heaf ago I developed more sores, got a bacterial infection in one, was one antibiotics and finally 3 weeks of antibiotics by iv for 3 weeks. Large sore finally healed 5 months later. In December my wound Dr and my rheumatologist gave me a Rituxin infusion for my RA. I developed a severe reaction to it, hives and itching all over my body. It helped my RA, but caused other problems. My drs referred me to Mayo Dermatology and vascular, and she set up appts with Rheum Hemotology.
Finally got treatment but it still is painful and my skin feels like leather.

Welcome, @merrycat. Fellow members @zenk @msmerry @cwhorton may have some ideas about dealing with pain and skin that feels like leather after the wound has healed.

I'm so glad you got appointments with dermatology and rheumatology and hematology at Mayo Clinic. Have you already been to Mayo? What treatments did you get? Have you told them about the residual pain and skin sensation of leather?

Merrycat, In all the time you have had these ulcer like sores on your leg have you had a punch biopsy near one of the sores to determine if you have Lividoid Vasculopathy ? If you do have LV ,not a Vasculitis , you need to see a vascular doctor to see if your small vessels, microvessels are blocked with fibrin . Then, a blood thinner is probably in order to get as much oxygen to the sores as possible. I take Xarelto 15 mg. daily . I would take 20 mg. if possible but I bruise too badly. There are many diseases that Mayo can rule out for you with blood tests that may contribute to LV. We continue to look for etiology for my LV but you may never know why you have it. I know that blood thinner works fairly well for me. Some do great with IVIG . Tell us what Mayo has to offer you. Thanks, Zenk

I did go the Mayo. Hematology prescribed Lovnox a twice daily shot of blood thinner. My feet and legs started to feel better. My next visit to Hematology at Mayo, my Doctor prescribed Eliquis twice daily. Vascular did a regeime of leg wraps and santyl on my wounds to be changed daily. Wounds have all healed. I am feeling so much better, back to work for 1/2 days. I contribute the faster healing to the blood thinners opening up the vessels in my feet.

I did get treatment. Rheumatology agreed with the treatment from my Rheumatologist.
Vascular treated my ulcers with wraps and daily application of Sanytl. I continued to see my wound center Doctor for weekly treatment. Hematology put me on twice daily shots of Lovenox, and transitioned me to Eliquis, a blood thinner. My ulcers have healed, my feet are starting to look like feet again, most of the pain is gone. My skin is finally healing also. I had about given up when I went to Mayo. I can't thank those Doctors enough.

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

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

@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?