Mayo Clinic Connect
I am looking for outcomes in the use of blood thinners in the treatment of Lividoid Vasculopathy
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
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.
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
Liked by gonefishinmt
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.
You’ve been taking Xarelto for awhile now. Is it proving to be effective in your case?
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!!
Liked by Robin Sims, Colleen Young, Connect Director, 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.
Connect Community Director
Liked by aimeenc, Martin, Volunteer Mentor, gonefishinmt
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
Liked by aimeenc, Colleen Young, Connect Director, gonefishinmt
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.
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.
Liked by aimeenc, Martin, Volunteer Mentor, Colleen Young, Connect Director
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.
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.
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.
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.
@Martin_Lemieux – Tweet
Disclaimer: OBVIOUSLY i’m not a doctor, so consult someone with a shiny plaque on their wall 🙂
Liked by aimeenc, gonefishinmt, Colleen Young, Connect Director
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.
Liked by aimeenc, Colleen Young, Connect Director, Martin, Volunteer Mentor
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!
Martin R. Lemieux
Liked by aimeenc, Colleen Young, Connect Director
@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!
Liked by marlene64, aimeenc, gonefishinmt
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