I am looking for outcomes in the use of blood thinners in the treatment of Lividoid Vasculopathy
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
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
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 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
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 - 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.
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 🙂
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.
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
@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!
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.
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.
@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.