Livedoid vasculopathy

Posted by angelasmom @angelasmom, Aug 3, 2011

Looking for people with the rare blood clot and leg and foot ulcer disease of Livedoid Vasculopathy. Mayo seems to be experienced at treating this disease so I thought I would find you here, I have it.

Interested in more discussions like this? Go to the Blood Cancers & Disorders group.

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

REPLY
@aimeenc

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

Jump to this post

@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?

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