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.
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.
I have had coumadin (warfarin, ie. rat poison) twice for blood clots and<br />
also the injectable blood thinner that is given for clots in the lung.<br />
Neither seemed to affect the formation of the LV ulcers. The aspirin I take<br />
doesn't seem to do anything for the ulcer, but the incidence of blood clots<br />
had gone way down. I have factor V Leyden, which makes me a good candidate<br />
for clots and also for LV.<br />
<br />
My father was on prednisone for a short time to try to reduce a lung<br />
inflamation. His personality went from that of a stoic Sweed to that of a<br />
wild Irishman. The inflamation also got worse. We finally had a lung biopsy<br />
done and he had Mycobacterium avei (bird TB). The prednisone did nothing<br />
for the infection but make it worse.<br />
<br />
I have had prednisone creams, and eye drops for allergies. Benadryl works<br />
better on topical allergies than prednisone, and the eye drops precipitated<br />
local retinal detachment. I read all ingredients and look at chemical<br />
structures on all medicines, creams, topicals that I take. Doctors keep<br />
thinking that I must be diabetic because of the LV ulcer, and they try to<br />
apply bandages, and compresses like duoderm, xeroform, etc that may work<br />
for diabetic ulcers but only serve to aggravate an LV ulcer. Drs are well<br />
meaning but LV is rare so we get treated for problems other than LV, and<br />
the treatments often damage our ulcers to the point that they become<br />
increasingly difficult to manage.<br />
<br />
Sheila<br />
<br />
@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.
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.
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!!
@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 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.
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).
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.
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.
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).
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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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
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2 ReactionsI have had coumadin (warfarin, ie. rat poison) twice for blood clots and<br />
also the injectable blood thinner that is given for clots in the lung.<br />
Neither seemed to affect the formation of the LV ulcers. The aspirin I take<br />
doesn't seem to do anything for the ulcer, but the incidence of blood clots<br />
had gone way down. I have factor V Leyden, which makes me a good candidate<br />
for clots and also for LV.<br />
<br />
My father was on prednisone for a short time to try to reduce a lung<br />
inflamation. His personality went from that of a stoic Sweed to that of a<br />
wild Irishman. The inflamation also got worse. We finally had a lung biopsy<br />
done and he had Mycobacterium avei (bird TB). The prednisone did nothing<br />
for the infection but make it worse.<br />
<br />
I have had prednisone creams, and eye drops for allergies. Benadryl works<br />
better on topical allergies than prednisone, and the eye drops precipitated<br />
local retinal detachment. I read all ingredients and look at chemical<br />
structures on all medicines, creams, topicals that I take. Doctors keep<br />
thinking that I must be diabetic because of the LV ulcer, and they try to<br />
apply bandages, and compresses like duoderm, xeroform, etc that may work<br />
for diabetic ulcers but only serve to aggravate an LV ulcer. Drs are well<br />
meaning but LV is rare so we get treated for problems other than LV, and<br />
the treatments often damage our ulcers to the point that they become<br />
increasingly difficult to manage.<br />
<br />
Sheila<br />
<br />
-
Like -
Helpful -
Hug
3 Reactions@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 🙂
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3 ReactionsHi @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
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3 ReactionsHi 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.
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2 ReactionsHi @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).
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3 ReactionsHi @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.
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2 ReactionsThis 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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2 Reactions@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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2 ReactionsAll:
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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2 Reactions