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zenk

Treatment options for Lividoid Vasculopathy (LV)

Posted by @zenk in Skin Health, Mar 19, 2014

I am looking for outcomes in the use of blood thinners in the treatment of Lividoid Vasculopathy

Tags: Blood Thinners, Livedoid Vasculopathy

zenk

Posted by @zenk, Mar 19, 2014

I have started on Xarelto 15 mg for LV today . Am looking for what I might expect for my LV ulcers regarding healing or not. Thanks, Zenk

Posted by @Margaret_Marie, Apr 24, 2014

Hi @zenk. Here is some information about the side effects of Xarelto: http://www.mayoclinic.org/drugs-supplements/rivaroxaban-oral-route/side-effects/drg-20075013. Hope this is helpful.

zenk

Posted by @zenk, Sep 13, 2015

I have been suffering with LV for 6 years. The open ulcer I have now on my foot is getting bigger and very painful. I am on Xarelto 15 mg and have been seeing wound care on a regular basis. Has IVIG helped close existing ulcers for any of you? Thanks, Zenk

gonefishinmt likes this
gonefishinmt

Posted by @gonefishinmt, Wed, Jan 27 at 1:08pm CST

Zenk - I've not tried either of those meds so have no experience with them. This week, my doc is trying to get approval to use a wound cover made of sheep placenta membrane. I'll let everyone know whether it is effective after I've used it for a while.

gonefishinmt

Posted by @gonefishinmt, Tue, Apr 5 at 7:32pm CST

Hi @zenk:
You've been taking Xarelto for awhile now. Is it proving to be effective in your case?
Thanks,

gonefishinmt

Posted by @gonefishinmt, Mon, Jan 25 at 5:19pm CST

Has anyone had any experience with the use of the drug CellCept in treatment of skin ulcers from Lividoid Vasculopathy? Interested in any successes, failures and side effects. Have tried other drugs such as Azathioprine (bad side effects), methotrexate (moderate side effects) and Plaquenil (virtually no side effects) but none have been effective in closing the LV ulcers. So far have been denied CellCept by ins because LV is not a labeled use. It is very expensive w/o insurance and I would like to know of any successful use for LV. Thanks.

aimeenc

Posted by @aimeenc, Thu, Feb 4 at 7:26pm CST

Hi @gonefishinmt,

I'm new to this site & first must say how good it feels to hear from others with this crazy illness (LV) & know I'm not alone! I do have experience with cellcept, but should start by explaining my condition & how it was diagnosed.

About 5-6 yrs ago, my hands started to become very swollen & reddened. Around the same time, my feet started to turn a brownish/ reddish color & all my digits (fingers & toes) would turn purple when cold. I was initially diagnosed with Raynaud's syndrome. A year or 2 later, I started having other symptoms (fatigue, joint pain, general malaise) & was referred to a rheumatologist, who diagnosed me with Cryofibrinogenemia after my blood work tested positive for it. Shortly after this diagnosis, I started to get these very painful reddened areas to the tops of my feet. I was referred to a hematologist in Indianapolis who started me on high dose prednisone.

About a month later, with the red patches getting worse & becoming more painful, my dermatologist took biopsies & they came back as venous insufficiency with some signs of the Cryofibrinogenemia. She also gave me a topical steroid cream to help with the pain & itching. After two days of using the cream, all my reddened areas opened up, including the biopsy sites. Most of the wounds were on the top of my left foot near my toes & one wound that tunneled in between my toes.

At this point, I was referred to the University of Chicago. The rheumatologist there started to wean the prednisone (it was doing much more harm than good) & started me on trental & cellcept. This was in June. By December of that same year (2014), my condition had continued to worsen, the ulcers weren't healing & new reddened patches had started appearing on my other foot, as well. I also had other more generalized symptoms, such as, fatigue, muscle pain & weakness, joint stiffness & pain, dry eyes, pleurisy, & an occasional malar rash. My ANA always came back positive, but all of the more specific auto immune tests were normal. Still, my rheumatologist felt that I did indeed have some sort of autoimmune disorder that just hadnt revealed itself yet.

Since my condition was worsening, my hematologist in town referred me to the Mayo Clinc in Rochester. So in Jan 2015, I spent a week at the Mayo Clinic & I must say, had such a wonderful experience. The dermatologist there took more biopsies on my bil foot wounds & those both came back as LV. So my final diagnosis was LV caused by Cryofibrinogenemia secondary to an undiagnosed auto immune disorder. Unfortunately, the physicians I saw there had only seen cryofibrinogenemia one other time, so didn't have much to base my treatment plan on. Their 1st recommendation was to try Therapeutic Plasma Exchange (TPE) or plasmapheresis. The wound care team there was amazing & after debriding my wounds, 5 daily treatments of ultrasonic mist therapy, & changing my wound care routine from hydrogel to santyl ointment, my wounds looked better than ever & were almost completely healed a few months later.

I started the TPE treatments when I returned home. I had to first have a permcath placed in my right subclavian vein to use for the treatments. I completed 2 months of every other day treatments with no change in my wounds, pain, or any other symptoms.

So, the next plan recommended by the physicians at the Mayo Clinic was Coumadin therapy. I was started on Coumadin in April of 2015, in addition to my other meds (trental, aspirin, norvasc, cellcept, medrol low dose for joint pain since I could no longer take ibuprofen, & pain meds as needed).

By last fall, my wounds were basically all healed except for a couple scabby areas that wound peel & re scab over & over again. I do believe the Cellcept was helping- with my wounds, as well as, other symptoms. However, my rheumatologist in chicago disagreed & felt that since I mainly had LV only now (my lab tests for the cryofibrinogenemia had been negative the last several times checked), that I only needed to be on blood thinners. However, two months after the cellcept was stopped, the LV has flared back up again & the scabby areas on the top of my left foot near my toes has opened back up again & is causing me incredible pain. In addition to my regular pain killers (which are barely even touching the pain,) my doctor prescribed a lidocaine ointment to help numb the area. This works great, but only lasts an hour or two.

I saw my rheumatologist last week when I first started noticing the wound opening up & she started me on plaquenil. But I guess it takes 2-3 months to even start working, so it'll be awhile before I know if it helps.

Today, I saw wound therapy again for the first time since my wounds have opened back up & the physical therapist used a paste called Calazime, which is a zinc type paste similar to diaper rash paste. She applied it to the open wounds on my left foot & the scabby reddened healed areas on my right foot. The paste burned terribly when applied & even though she said it would go away after 5-10 mins, it was still burning terribly over an hour later. So, I soaked my feet in water to try to get it off (it's a very thick paste), & went back to using Vaseline, which i find very soothing. However, after soaking long enough to get some of the paste off, I noticed that the healed wounds on my right foot had opened up now too- which explained why I was in so much pain from that foot as well.

I plan to call my rheumatologist in the morning & ask if I can possibly restart the cellcept as I do believe it was helping more than we realized. And I think the next recommendation made by the Drs at Mayo if the Coumadin didn't work was IV immunoglobulins (IV IG), so I'll have to check with them about that as well.

May I ask if Sany of you also have a deep, knawing, agonizingly painful itch in & around your wounds? If so, what treatments have you found that help? The only thing that helps me is oral Benadryl, but it makes me so tired & loopy & I have 2 small children to contend with,so need all the energy I can get!

Also, anyone else with foot ulcers have trouble finding shoes to wear? I've only been able to wear oversized crocs, but they cause pain to the bottom & sides of my feet from my foot sliding around so much in them. Also, any suggestions for walking aids?? I have so much pain in my feet all the time, but it is far worse when standing or walking. I was using crutches initially, but now that both feet are affected, they do me no good. Was thinking of maybe trying a cane??

One more question, besides narcotic or even non narcotic medication, what other types of treatments do you find that helps with the pain? The pain is really starting to affect my life. Cooking, cleaning, etc is nearly impossible without excruciating pain when standing.

Sorry for the long post & all the questions! I've never "talked" with anyone with similar problems to mine before & I have so much I want to ask!!

Sincerely,
Aimee

colleenyoung

Posted by @colleenyoung, Mon, Jan 25 at 5:49pm CST

Hi @gonefishinmt,
I thought it might be helpful to merge the new thread you started with the threads started by fellow Connect member @zenk in the hopes that you have treatment option experiences to share.

You may also be interested in reading this discussion thread https://connect.mayoclinic.org/discussion/livedoid-vasculopathy/ where you'll meet @angelasmom, @spence, @prairiesmoke and @mlemieux.

I hope they'll be able to shed some light on your question about the drug CellCept and any other questions you may have.

Colleen
Connect Community Director

mlemieux

Posted by @mlemieux, Wed, Jan 27 at 11:01am CST

Hi @gonefishinmt ,

Here in Canada, we don't have CellCept offered here (not in my area anyways), but it's another "immunosuppressive agent" type of drug which is very similar to "Prednisone", which "Prednisone" is often used to help with flare-ups with Vasculitis patients, NOT LV patients. They are VERY similar conditions, but actually have opposite effects and medications.

My doctors put me on Prednisone for almost 2-years not realizing that I did not have Vasculitis, but the opposite LV. And I will tell you that Prednisone and other type drugs are NOT to be meddled with, I literally felt major changes inside, not related to my legs. Sleep was all but NULL and even my family members noticed a major difference in my personality.

If anyone ever recommended a similar drug again, it would have to mean that I have no options left in life in order to get me to ever take this medication again. Please do your research and once you have all the facts, then pursue taking this medication under strict supervision. Remember, these class of drugs make you more susceptible to other infections and usually have to be on a strict regiment.

Before you go spending money you may not have on a drug you don't need... find communities concerning "Vasculitis" patients to see if they have been prescribed your CellCept.

Good luck with everything, stay positive 🙂

Martin R. Lemieux
@martin_lemieux

prairiesmoke

Posted by @prairiesmoke, Tue, Feb 2 at 8:39am CST

I have had coumadin (warfarin, ie. rat poison) twice for blood clots and
also the injectable blood thinner that is given for clots in the lung.
Neither seemed to affect the formation of the LV ulcers. The aspirin I take
doesn't seem to do anything for the ulcer, but the incidence of blood clots
had gone way down. I have factor V Leyden, which makes me a good candidate
for clots and also for LV.

My father was on prednisone for a short time to try to reduce a lung
inflamation. His personality went from that of a stoic Sweed to that of a
wild Irishman. The inflamation also got worse. We finally had a lung biopsy
done and he had Mycobacterium avei (bird TB). The prednisone did nothing
for the infection but make it worse.

I have had prednisone creams, and eye drops for allergies. Benadryl works
better on topical allergies than prednisone, and the eye drops precipitated
local retinal detachment. I read all ingredients and look at chemical
structures on all medicines, creams, topicals that I take. Doctors keep
thinking that I must be diabetic because of the LV ulcer, and they try to
apply bandages, and compresses like duoderm, xeroform, etc that may work
for diabetic ulcers but only serve to aggravate an LV ulcer. Drs are well
meaning but LV is rare so we get treated for problems other than LV, and
the treatments often damage our ulcers to the point that they become
increasingly difficult to manage.

Sheila

gonefishinmt

Posted by @gonefishinmt, Wed, Jan 27 at 1:00pm CST

Martin - Thanks so much for sharing your history with LV. It seems we have a remarkably similar past. My diagnosis has vacillated between Vasculitis and Vasculopathy for the past 3 years or so and recently has settled on Lividoid Vasculopathy based on a number of factors determined from a whole lot of lab work and biopsies. I have been on prednisone of various doses and tapers for nearly 2 years and it is the only thing so far that will keep the swelling in check. I have also had courses of several other drugs including Allopurinol and Colchicine (primarily gout meds but in use for vasculitis), Hydroxy-chloroquine (Plaquenil), Methotrexate and Azathioprine (Imuran) plus a whole list of topical crèmes. For pain I was on a large dose of Gabapentin (Neurontin) in addition to Oxycodone and several different antibiotics. Like you, I experienced physical and personality changes that were very much noticed by family members.
I have now returned to Plaquenil, Colchicine and a low maintenance dose of Prednisone the combination of which has few side effects. Imuran was the worst for side effects including very painful ulcers in my mouth and on my tongue. CellCept was thought to be effective but with fewer side effects than Imuran. Its a moot point however, as CellCept is labeled only for use with autoimmune diseases such as Lupus and Medicare wouldn't budge in its refusal to approve it for my case. Autoimmune disease has been ruled out for me based on lab tests conducted over the past two years.
I agree completely with you as does my wife in terms of not trying any new and expensive drugs without some assurance that it will yield positive results. As you point out, Prednisone is bad enough and I've tried to wean off of it several times only to suffer from serious swelling (edema) and reopening ulcerations. You are also right about being vulnerable to every bug that comes along when taking immuno-suppressants for long periods. I ended up in the hospital with pneumonia a couple of months ago when taking Imuran. The pneumonia caused heart stress because of low oxygen transfer which then triggered an episode of SVT (supra-ventricular tachycardia). While there I also acquired an infection of Enterobacter aerogenes in a large existing ulcer on my ankle. Imuran is nasty and wasn't very effective in treating LV.
I would like to hear what treatments have proven effective for your situation.
Thanks again for your post.

mlemieux

Posted by @mlemieux, Thu, Jan 28 at 9:28am CST

Hi @gonefishinmt ,

I hope it doesn't bother you too much when I say with all kindness, it's nice to know I'm not the only one trying to battle and un-fair fight with this illness.

Over the years, we have tried almost anything. Unfortunately for me, battling LV is almost deemed impossible...since at 1st, I suffer from many DVT's (Deep Vein Thrombosis) from a hereditary condition called Factor V. Which ultimately means I'm prone to clotting for life. Not being on blood thinners is not an option for me. When I was younger, I was put on studies for "Coumadin" to make the drug generic world wide. Ironically, I'm not a fan of Coumadin what so ever after years of taking the medication. There are many side effects that are unnecessary due to the other options available nowadays.

Pentoxifylline:
I was put on this medication to help blood flow, which in my case is greatly needed. This too had zero results, but might prove effective in your case.

Low-Molecular Weight Heparin:
Have you explored "Heparin" injections yet? Low-Molecular Weight Heparin. For me this too unfortunately did nothing since my clotting factor played against my ability to heal long-term wounds on both legs and at the same time, counter the effects of LV. But for yourself, this one of the few options available in a short list of recommendations made by professionals world wide.

The one downside is that you will be required to inject yourself on a daily basis. Over time, my stomach became extremely bruised and hardened which prevented me from being able to inject into my stomach any further. From there your options are to inject directly into your upper thighs (pinching the skin).

Hyperbaric Oxygenation Therapy:
One of the better options after medication(s) have been exhausted, is by directing pure oxygen into your vascular system to help speed up the healing process on the exterior and interior where ulcers not seen by the human eye can fester and cause a great deal of pain. Again, due to my other conditions (swelling/inflammation/deteriorating arteries), this proved to be somewhat ineffective as well. BUT, don't take my failure as your own. Hyperbaric Oxygen Therapy can provide all sorts of useful healing, in fact professional sports players use oxygen tanks all the time to speed up the healing process. I'm not sure what your medical insurance will think of it, since it tends to be very expensive, but it's definitely worth a shot. Above all medications and procedures I've tried over the years, this one proved to be the most promising.

Other Therapies:
Basically, to help your research, search for "Livedoid Vasculopathy Treatments". There's a small but thorough report which my specialists are going through one by one trying all the treatments detailed in this dermatologist report on studies and findings.

-----

Dealing with Pain & Swelling:
(TALK TO YOUR DOCTOR OF COURSE 🙂

After many years throughout my life dealing with pain, swelling, bleeding, etc. The below combination of medications have proved most effective for pain management while dealing with our type of illnesses and side effects (The below med's have been taken over the years to help at various stages, but are not an exact list of what I take now since I've learned to deal with the pain better through more holistic methods):

Inflammation - Naproxen 500mg x2 daily:
Naproxen is by far the best to help with the swelling, especially first thing in the morning and at night before bed. the only downside is that it kills your stomach, so you will be forced to take something to help with stomach pain, bloating, etc. I have found "Tecta (brand) aka Pantoprazole" 40mg x2 daily to be the best solution in order to counteract the effects of Naproxen.

Nerve Pain - Tizanidine 4mg x2 daily:
For me, after years of battered arteries and muscle deterioration, my nerves have been intertwined and cause a great deal of pain. I would get spikes of pain so bad that nothing would help. This one medication changed all of that. No real side effects to mention, just a relief from nasty pain-spikes.

Pain ( level 6/10 ) - Oxycocet aka Percocet's x4-6 daily:
This is my bread and butter since percocet's don't have too many side effects, especially when it comes to daily interactions and sound living. I've learned to take these when needed throughout the day to help minimize any discomfort from daily tasks. Results vary from each person of course, I try to keep my mind fresh and coherent which percocet's help with that.

Pain ( level 7-10/10) - Hydromorph or Oxycodone / Oxycontin x2 daily:
For severe pain, unfortunately we need to turn to narcotic type drugs, which I've done everything in my power to stay away from. In my early years, I was taking Oxy's twice daily, but ended up with migraines and terrible sleeping habits, not to mention sometimes having a foggy mind (never fond of). I found Hydromorph to be less intrusive, but still has it's complications of course since both can be addictive.

Like all meds, i'm sure you've found what works best for you.

MEDITATION:
I can't stress enough the benefits I've found from meditating 10-15 minutes daily. Everything seems to hurt less and my body seems more in tune now that I meditate. Getting sick on a regular basis has been minimal at best. And of course, you don't need to sit there in silence in an awkward pose, merely sitting with your eyes shut to some nice music can have the same effect.

------

That's about it 🙂 Take what you need, I truly hope this helps you find healing methods you haven't tried, or if anything, helps to find ways to minimize the pain and live a better life.

I hope this helps!
Please keep us posted and thank you for sharing your story as well.

Cheers!
Martin
@Martin_Lemieux - Tweet

Disclaimer: OBVIOUSLY i'm not a doctor, so consult someone with a shiny plaque on their wall 🙂

gonefishinmt

Posted by @gonefishinmt, Sat, Jan 30 at 8:50am CST

Martin:
Thanks - that's heck of a lot of really good information you've provided. I'll discuss these alternatives with my doc next week. You have a wealth of experience that I'm sure all of us LV folks really appreciate you're having shared.
Thanks again

mlemieux

Posted by @mlemieux, Sat, Jan 30 at 2:43pm CST

You're very welcome @gonefishinmt . I have a lot more to share, but held back a little so not to overwhelm anyone looking in. Let me know how these suggestions go with your health care specialist. I can/will provide with more suggestions that me and my specialists have tried in the past.

I truly one of these are the key for you!

Sincerely,
Martin R. Lemieux
@Martin_Lemieux

mlemieux

Posted by @mlemieux, Tue, Feb 2 at 2:22pm CST

@prairiesmoke thank you for sharing that information. I've been in the exact situation you are in. Factor V Leiden completely battles against LV. I found out when I was around 20-21 after my 2nd clot. My regular GP (General Practitioner) and 5 different teams of specialists continue to hit a wall when it comes to healing my wounds because of both conditions.

I wonder if there's a direct relation between Factor V & Livedoid Vasculopathy? I've found others (rare) with the same conditions we have and they too have persistent unresolved wounds.

My 1st initial wound (left leg) opened up August of 2006 and hasn't closed since. In fact, this one persistent wound has grown at a stable rate and is now the size of a Canadian Football. I have another wound on the lower left leg were my ankle is, this one is about the size of a baseball. My 3rd open wound is on my right leg, which is about the size of a concert ticket. All 3 wounds change shape and size during the seasons, especially during winter.

Like you, I too have to use compression bandages (ie Coban 2 - 2 Layer Compression Bandages) which if I remove them and keep them off, my feet and ankles will blow up like a balloon and give me a great deal of pain. My legs have not been able to be wet (submerged in water) for over 9 years, which I'm sure you can understand is something hard to deal with. Water used to be my friend and is now my enemy due to bacteria in the water.

I've found the PERFECT shower companion, I use a plastic leg wrap system found at Walmart that is designed to keep leg casts dry while showering!!! Look for "ArmRX Leg Protectors". I usually find them in the isle with bandages, compressions, etc. They are packages in small white square plastic bags for about $10ea CND. The absolute best discovery in years. I used to have to sit on a specially designed chair with my legs hanging out of the shower and protected with a towel. Very uncomfortable and annoying. Not anymore, this one small discovery gave me a different type of hope, the hope to learn to live with these persistent daemons.

For a time in my early years, I would disregard what my doctors said and just washed accordingly without protection for my legs. This one act led to a 2-week stay at a local hospital in complete isolation. They feared I was contagious to those in ICU. I also had to have a small surgery to remove dead sluff* in order to prevent further infection, including amputation.

I think a big fear for LV suffers is what will happen later on? All of us grow old, bones aren't as strong as they used to be, immune systems don't react as well, etc. What will happen to us after 10-15-20 years suffering the same health conditions? I'm 37 now and my legs are no better than someone who is 65+ who has had a good productive life.

I apologize, I'm rambling on with no real point. Just nice to speak to you all who understand for once. No one in my life around me can fully understand the suffering that we all go through on a daily basis. Not just from one thing, but from many factors (pun intended) that seem to be coming to us at all angles.

Thanks for listening!
Martin 🙂

gonefishinmt

Posted by @gonefishinmt, Fri, Feb 5 at 11:00am CST

Hi Martin:

Thanks for more interesting stuff. I've been using the cast protectors to shower for about 3 years now and find they work well for a while but eventually leak. So I go through them at the rate of around 1 to 2 per month. Haven't always been able to tell what makes them fail, but they seem to get pinholes maybe from sharp edges on the drain cover and sometimes the top seal rolls over and lets water in. Still all in all a good solution. Much better than the alternative you describe.

Your open ulcers - wounds - are fairly large - much larger than mine, although mine have typically come and gone over an area about the same size as you describe. So I have large patches of scar tissue around both ankles. I do have one persistent ulcer that's been with me for about 2 years now - this is the one that's being treated with dehydrated amniotic-chorionic tissue.

Re age - I'm now 73. My first symptoms appeared when I was 58 - some mottled rust spots on one lower leg. No pain or ulceration for the first year or two. At that time the symptoms were seasonal - appear in spring and subside in winter. The first ulcerations were fairly mild and I simply covered them with Band-Aids. As time went on and they refused to heal I sought help from my family physician, who in retrospect, didn't really understand or recognize the condition. Still the lesions remained somewhat transient or seasonal. Three years ago, during a period when I was relatively asymptomatic, I had a total knee replacement which left me with a serious staph infection in the new prosthesis. Once that was finally diagnosed, they removed the new prosthetic knee and installed a temporary placeholder while I underwent 10 weeks of IV antibiotics (Vancomycin) to deal with the staph which had infiltrated the bones beyond the hardware implant. After being certified disease free, the temporary place holder was removed and a new prosthetic knee was installed.

That entire TKA process took most of 2013. A nerve block from the first TKA surgery went awry and left me with permanent nerve damage for extensive areas of the left leg. LV ulcers began to reappear after the first surgery and now in retrospect, the docs believe that the trauma of the nerve damage and of having 3 TKA surgeries on the same knee in the space of one year served to trigger the LV condition out of a period of relative dormancy. Interestingly, I've found a few studies that looked at the relation of LV-like conditions to trauma (accidents, surgeries, etc) and to high stress (i.e. on the job or a bad abusive relationship, etc). While not totally conclusive the studies I saw suggested that a causal relationship (high stress/trauma to LV-like symptoms) is likely.

Back to age - there is no doubt that I'm suffering more in general and taking longer to heal at age 73 than I was even 6 years ago, let alone15 years ago when the first symptoms appeared. The last 2 years have been particularly difficult because of the debilitating side effects of various Rx drugs. Long term Prednisone use has caused me to gain considerable weight and along with the nerve damage, caused me to tear the left Achilles tendon twice. The tendon could not be surgically repaired either time because of active LV ulceration near or over the Achilles area. As a consequence, I can no longer go on regular walks with my wife and our dog. Other exercising has likewise suffered. I now struggle to force myself to exercise where it used to be a pleasurable activity. I've had to give up most outdoor activities, including fly fishing as I can't do any water wading and no longer have the strength to wade in the currents. It's no secret that lack of exercise contributes to poorer general health which relates to the healing process. It's a vicious circle that only gets worse as a person ages.

Bottom line - it's vitally important as we age to keep up an exercise routine and, despite the difficulty, maintain a positive attitude to get the best healing results. This is true for everyone no matter what disease you may be blessed with.

aimeenc and Martin, Mentor like this
gonefishinmt

Posted by @gonefishinmt, Sat, Feb 6 at 5:50pm CST

Hi @aimeenc:

Welcome to the discussion group and thanks for sharing your story. I hope you've had a chance to read some of the previous posts on the subject of LV. There are several threads going on LV topics, so please look at all of them for information, answers and suggestions. I'm sure @colleen_young can help with pointing you in the right direction.

For all - I appear to be having positive results with EpiFix and with DuoDerm, although its only been one week since I started on both. Will keep everyone up to date on my progress using these treatments. BTW for everyone's information, both EpiFix and DuoDerm are considered to be treatments so thus far are covered by Medicare Part B. I was denied use of CellCept under Medicare Part D (Rx meds).

colleenyoung

Posted by @colleenyoung, Sun, Feb 7 at 12:24pm CST

@gonefishinmt Thanks for making the introduction to @aimeenc. Welcome to Connect Amiee and especially this growing group of people sharing about LV.

There are a couple of other active discussions that you might also like to read.

https://connect.mayoclinic.org/discussion/livedoid-vasculopathy/

https://connect.mayoclinic.org/discussion/chronic-wound-care-what-products-do-you-use/

I'd like to tag @ceejay and @vickieb to join this discussion, then I think we'll have all the active LV Connect members together.

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gonefishinmt

Posted by @gonefishinmt, Sat, Feb 6 at 6:43pm CST

Hi @prairiesmoke:

Thank you for sharing your story. It's interesting that DuoDerm apparently aggravated your LV ulcer(s). I've just started to use DuoDerm, but I should be clear that it's only on ulcers that have scabbed over, but won't progress any further. These are not the classic punched out painful open LV lesions that they were a year ago. My one remaining stubborn open ulcer is receiving EpiFix, a dehydrated human amniotic membrane. We'll see how that goes.

Keep the faith as well as your outlook well fed and happy. In life, as in sports, a positive attitude often is the difference between winning and losing.

aimeenc and Martin, Mentor like this
mlemieux

Posted by @mlemieux, Sun, Feb 7 at 11:23am CST

This topic here is probably one of the most comprehensive topics online concerning LV so please keep the ideas coming. I've searched for years for answers online and haven't found many. Some few studies keep popping up here and there, and as they do, I'm sure the members here will make them available to us.

As @gonefishinmt pointed out, as time goes on, it's get's harder and harder to do normal activities. I'm 37 now and I cannot do 1/2 the things I used to. The mental-game this condition delivers is a very tough battle. I tend to look at life differently now with a new perspective without playing the "poor-me-game". It's easy when someone is suffering to drag others into their suffering. Stay strong, be a positive role-model like so many here are (It's an honor to know them) and reach out when you need help.

LV=Suffering there's no doubt about that. But i've found admits that suffering, there's potential for a lot of hope. When I tell my story to others and do it with a smile, suddenly all of their problems go away. They remember how beautiful and precious small things are like, "going on a daily walk with their dog". Those are the kind of things that inspire me and keep me from the black-pit of despair.

Dealing with LV is a lifelong battle, but we are not alone in this battle. Take comfort in this, for anything that helps you fight just a little harder, to ask one more question, to look forward to one more test is a step closer to helping all of us at the very same time.

Thanks all for sharing such powerful messages and opening new possibilities.

Martin

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gonefishinmt

Posted by @gonefishinmt, Mon, Feb 15 at 9:21am CST

All:

Re use of EpiFix - I've now used EpiFix (dehydrated amniotic membrane) on one stubborn LV ulcer for about 2 weeks now and so far results appear positive. This is a relatively small ulcer, about 3/4 inch diam, but deep and prior to EpiFix, resistant to other treatments attempted. The EpiFix membrane is ultra thin and is intended to absorb into the wound. I'm on the second application now and will have a third as soon as the current one has been sufficiently incorporated into a wound cover. The applications are not painful. Treatment protocol is that the membrane is applied and covered with telfa pads (2) soaked in sterile normal saline. This is then covered by a dry telfa pad and then the wound area (ankle in my case) is wrapped in cotton gauze. It's necessary to keep the membrane hydrated so this procedure is carried out a minimum of three times a day. More frequent hydration is better if it is possible. So far it appears to be having a positive effect, but it's early in the process. I'll keep the group informed.

Re use of DuoDerm - Several scabbed over ulcerated areas were covered with DuoDerm, a thin non-dissolving artificial membrane, followed by telfa pads and a gauze wrap. The outer wraps (gauze and telfa's) were changed twice daily. After five days, the DuoDerm was removed (peeled off). The DuoDerm caused the scabs to dissolve and the ulcers to open. They remain somewhat painful. My doc thinks this was a success in that those old ulcers were debrided by the DuoDerm, which he believes is necessary to overall healing. I'm not so sure I would recommend DuoDerm however. I think it would depend on your specific conditions - DuoDerm is not a healing membrane in the sense that EpiFix is. It does not dissolve or become a part of the healing tissue. It is good for wound debridement if that is something you need.

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aimeenc

Posted by @aimeenc, Mon, Feb 15 at 10:04am CST

Thank you for the update & wonderful information you shared. May I ask who prescribes your wound care regimen? Is it a wound care physician? Do you also see a vascular surgeon? I'm being managed by rheumatology, hematology (blood thinner management), dermatology, & wound care. However, I recently had to switch my wound care from a hospital with wound care physicians to a hospital with only Physical Therapists (due to insurance). I've not been too happy with my new wound care PT as I feel she knows very little about LV & that I basically have to recommend my own care. So I'm very thankful for posts like yours, to give me ideas to recommend to her! I've also wondered if I should be seeing a vascular surgeon as well & wondered how many other patients with LV did so.

I'm still so thrilled I found this site. After reading all of the old & new posts, I no longer feel so all alone with this crazy illness.

gonefishinmt

Posted by @gonefishinmt, Sat, Apr 2 at 5:06pm CST

Hi All:

Update re the use of EpiFix - I had EpiFix applied to two stubborn ulcers. I think they did two applications on one ulcer and three on the other. The ulcer with two apps healed rather quickly - at least in terms of LV time which seems to be much longer than normal time, if I'm making sense. It wasn't as deep as the ulcer with three apps, which is doing ok, just not healed over completely yet. So I think the net result is very positive for EpiFix. I'm told its very expensive, but I have yet to see any bills. For those of you who may not know, EpiFix is essentially dehydrated freeze dried amnionic / chorionic membrane taken from human placental tissue (only from full term deliveries).

My doc is also treating a patient with an ulcer much larger than mine. Its something like 5 in x 10 in, so a very large area. They are using the largest pieces of EpiFix they can get. I will encourage my doc to encourage his patient to join the group here so we can get a report on how well that's going.

All for now.

prairiesmoke

Posted by @prairiesmoke, Tue, Apr 5 at 8:44am CST

I use medihoney for debridement of dead tissue and for antibacterial effect
on my open ulcer. I tried apligraft on ulcer and it healed partially, then
took another year to heal fully but degenerated after four months and was
back to open ulcer again. Grafts will work for a while, but if the
original problem is that the capillary walls develop leaks, the graft may
not address this problem. When I looked at faulty sperm bundles from moths
under electron microscopy, the fibers holding the bundles together would
get vertical tears in their fabric (like a run in a nylon stocking). The
more pressure you put on the bundle (they are long and thin like a
capillary) the more they will tear. Some of the moths had bundles with few
tears and some were torn so badly that they were shredded (this was a
genetic problem that has a variable effect). Until science can figure out
WHY our blood vessels are weakening and tearing we will continue to have
problems. Ask your doctors if anyone has actually looked at our LV
capillaries with a scanning electron microscope that shows things in 3D or
are they still looking at light slides or transmission electromicrographs.
A picture here might well be worth 10,000 words at explaining our condition.

I have tried a number of unorthodox procedures on my ulcer over the years.
I have sprinkled small amounts of powdered turmeric on the ulcer to reduce
chances of infection (this is used in India as a paint on bare feet to
reduce infections). I had one dog who would go crazy when my ulcer started
to get even a slight infection or buildup of dead tissue, he would try to
lick the ulcer and clean it. He did a better job of cleaning the ulcer
than the doctor and it didn't get infected afterwards. I have also used
mashed jalapino pepper on the ulcer to get rid of infection (capsacin in
pepper is an antibacterial) but this is extremely painful. I have never
tried pot for the pain, but my brother who has a license to grow it for
medical reasons (4 ruptured discs in back) says that it helps with chronic
pain. Many states are now legalizing medical pot or are looking at it as an
alternative for intractable pain and nausea.

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gonefishinmt

Posted by @gonefishinmt, Mon, Feb 15 at 5:17pm CST

@aimeenc - I've not had a wound care specialist and only heard the term when I joined this discussion group (I live in a relatively small city in MT). The primary care doc for this condition is a dermatologist. I've also been seen a number of times by 3 different rheumatologists, my family doc (pcp), 2 other dermatologists and a vascular surgeon for this condition. The vascular surgeon was certain my problem was leaky veins and in 2012 he used a laser to destroy the greater saphenous vein between my groin and ankle (They used to physically strip the vein out, but now most use a laser to essentially cook it in place). This made absolutely no difference in LV ulcerations in the long run. My wound care is guided by my dermatologist and my wife who is very tuned in to this subject. The derm. doc is very good at consulting with and referring me to other specialists. But it is essentially left to my wife and I to determine the best wound dressing techniques to use at any given time.

Good luck with your treatment.

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gonefishinmt

Posted by @gonefishinmt, Wed, Apr 6 at 12:37am CST

@prairiesmoke - Sounds like you've spent some time in a bio-science research lab. Your point is well taken. Even though LV wounds may heal, as long as the underlying disease is still present, more breakouts are almost inevitable. We know a fair amount about the mechanism of LV. Now if we only knew more about what triggers an episode, we may be able to do something about the long term effects of our disease.

Some of the wound care techniques you describe may seem a bit un-scientific, but I remember reading a study by some medical researchers, that concluded that behind many successful home remedies, native cures, poultices, etc, there often is a solid, but unrecognized scientific basis.

Thanks for sharing. I agree with you that more LV research should be conducted at the molecular level if we are ever to fully understand this disease that affects us all.

prairiesmoke

Posted by @prairiesmoke, Tue, Apr 12 at 10:15am CST

As I read through the emails I get the impression that there is a great
difference between time of onset of LV (earlier in life vs later in life)
and also the severity of LV (small lesions versus large ones). According
to Mayo notes aproximately 20% of people with LV have Leiden Factor V for
blood clotting. I know 2 other people with Factor 5, one of my daughters
and a distant cousin and neither of them appear to have LV. My LV diidn't
appear until after 40 and was agrivated by a wound to my ankle, as was my
grandmother's LV. Our LV was localized to the ankle area. Many on this
list have severe LV that covers large areas of skin. I think what we are
seeing is a genetic trait with partial dominance and/or incomplete
penatrance. How many of us have close relatives with Factor 5? How many of
us had injuries to our legs, ankles or feet PRIOR to getting LV?

My younger daughter does not have Factor 5, but to be on birth control
pills was told she needed to be checked for Factor 5, since both me sister
and I have Factor 5. Factor 5 is inherited, most probably from my dad, who
seemed to have blood that clotted very quickly. When my younger daughter
was born I had at least a dozen surface clots on each thigh, I had the vein
removed in two surgeries but it did nothing to stop the LV ulcer. A
vascular surgeon did surgery and then tried injecting the veins in ankle to
stop LV. That didn't work,only made the whole area turn brown and small
pinhead size blood clots appeared. That was about 15 years ago. A young PA
in the dermatology clinic figured out that I had LV about 10 years ago.
Wound care since then has been not all that helpful. They used an
experimental sonicating treatment to help with wound healing, but the
machine operated at 10 times the speed needed for optimal healing and
destroyed the tissue I did have that was healing. They also kept putting
nonstick pads on the ulcer that had latex in them. I am allergic to latex.
If you have latex allergies please watch for warnings on Telfa and other
dressings!

My LV starts as small blood clots that then rupture creating a hole in
skin that leads to more tiny clots that then rupture and make more holes
and pretty soon I have an ulcer. I also get tiny clots on soles of my feet,
then the skin peels like it would for a regular blood blister. If I use a
cortizone cream on the area around the ulcer to reduce the inflamation, my
skin thins and I get more and more of the tiny clots and that make the
ulcer larger. Please be careful when using cortizone or its derivatives.

My doctor has me on 2 regular aspirin a day for blood thinning, and I eat
dark chocolate to help keep veins flexible (best excuse I ever found for my
chocolate cravings). I have taken warfarin for clotting and also the
injectable blood thinner, they didn't seem to affect the LV either way.

This has gotten pretty long, but I have tried to outline what I have found
to work and not to work (mostly what didn't work). It really helps if you
have a doctor who listens to you, takes you seriously and isn't afraid to
think OUTSIDE the box.

Sheila

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