Mayo Clinic Connect
Looking for people with the rare blood clot and leg and foot ulcer disease of Livedoid Vasculopathy. Mayo seems to be experienced at treating this disease so I thought I would find you here, I have it.
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What types of topical pain killers is everyone using? How do they work? Last night I did not get much sleep for the pain in my feet. I have two ulcers on the instep of my left foot that were zinging me all night last night. I am looking to see if there is something that can take the edge off long enough to let me sleep.
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TOPICAL – i use EMLA cream (before debriding) which takes about an hour to work and lasts 1-3 hours. Not a nights worth of sleep but it may help you get to sleep. I find that raising my legs hurts when I'm sitting or lying down, whereas sitting with my leg normally doesn't hurt, and with it raised about 4" -6" when sitting is OK too. Lying down flat suits me best. Lidocaine is also an option but not as strong as Emla
PAIN KILLERS – I take 2x 500mg paracetamol and 30 mg codeine. I have also taken another paracetamol or panadeine straight after the debriding – about an hour and half after taking the above. We are not one size fits all and I'm tall and not skinny so feel comfortable taking more than someone who is short and small.
Ruth in NZ
A topical pain reliever has been a great help to me over the past 10 years for my painful ulcers. I have used a prescription compound in cream form. The prescription includes 10% ketamine, 10% gabapentin, 5% baclofen, 5% diclofenac, 3% lidocaine, and 2% lipoderm. This cream medication requires a prescription and must be obtained through a compounding pharmacy. This prescription was not covered by my insurance. I paid $90.00. Alternatively, you could get a prescription for Lidocaine Hydrochloride Jelly USP 2%. I much prefer the compounded prescription. I have been able to use it several times a day for a number of years as needed. It has been a great help and really takes the edge off the pain for a few hours. You don't have to worry about using it too much. My wound center doctor writes this prescription for me. Your primary care doc could probably write it too.
Thank you, Zenk. I had a neurologist who had his own cream that he used to give me and it was expensive but it was worth every penny. Now that I have moved out of state and am having to go through the gauntlet of finding a new doc for this, I'm having a breakout after a year of remission. The timing couldn't be worse but we do what we have to. I will bring in the recipe for your cream to my Primary Care Physician next week to see if this is something I can get. Thanks!
Thank you, Ruth. I agree that we are not a one size fits all group. I was diagnosed and treated at Mayo Clinic for the past decade before moving. I remember clearly that they said we all have different extremes and symptoms. I have neuropathy with mine and the medications for that make me extremely nauseated and dizzy. Pentoxyfilene gives me the worst headaches and I am fatigued all the time. It is hard to remember what normal was actually like. I did take Xarelto for a year and it was a godsend but it is so expensive even with insurance. I did not have any breakouts on Xarelto at all.
I live in New Zealand where medication and treatment is free with few exceptions. When the ulcers appeared I went to the District Nurse Clinic at the Hospital Outpatients everyday for debriding and dressing. Once the ulcers were under control I went every two days, and now I go every three days, so there is consistent attention and opinion each visit. I don't always see the same Nurse and a Senior Nurse often pops in to see the progress. Each visit we discuss "shall we change or continue" with what we're doing. The end goal is resolve all issues. I now have one ulcer left from the 2nd outbreak, caused by the attempted change to pentoxyfilene in November '19 from 300mg aspirin, but developed some dermatitis – prob/poss from having the leg covered for the last 14 months. For the first time I am using a steroid, Dermol 0.05% and it is working, to stop the skin breaking down.
I am currently using Acticoat Flex 3 on the ulcer which is a silver coated stretchy polyester that allows the passage of exudate. There is a time frame around using most products and I have also used Iodosorb, an iodine ointment, with great results too. I use Microdacyn wound care spray to clean the leg.
For side effects of medication and how to help with that, there's a really good book – Drug Muggers by Pharmacist Suzy Cohen. You can buy the e-book/kindle on Amazon for $7? This version you can search, far better than any index. It's a great book everyone who takes medication should have.
Hope you get some good nights sleep.
I used to be treated at Mayo Clinic by a wonderful doctor who is my hero! It took three long painful years to get my diagnosis. Dr. David Wetter was the one who figured out the puzzle. I was sent to Derm, then to vascular and then neuro and then back to Derm. I say all of that because now I have moved to be near family here in Fort Wayne, IN and I am starting all over again. Nobody has heard of this condition and nobody knows where to send me. I am in the middle of what I call a "break out" and I am being sent to Dermatology next month. If they can't help me, the plan is to send me to Rheumatology. If they can't help me, the plan is to send me to cardio-vascular. I have been in remission for about a year and am now going through a break out. It's frustrating and upsetting to be in so much pain and feel like you are going through it alone.
I am noticing that other with LV also have some sort of immune deficient disease. I have always felt like the LV diagnosis was only half the problem. Every biopsy they took (and there were several), I ended up in the hospital on IV antibiotics because I wound up with cellulitis. Not once or twice but every time they biopsied me. My body was not able to fight off whatever pathogen I was fighting. I am extremely fatigued all the time and some days it takes every fiber of my being to get up out of bed. Joint aches, swelling of feet and ankles…. red patches on my cheeks. I can't address any of these issues until I am being seen by the doctor and specialty who will take me on here.
I am sorry. I would love to hear if I am crazy or if this is something to pursue? It has been a bit of a rough patch for me at the moment. Does anybody else suffer from neuropathy with LV? I do.
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Hi Andi and all, Just got out of thehospital where I had a cadaver graft placed over the very deep and painful ulcer on the lateral rt. ankle and around the back of my ankle where the achillies tendon is. I am finally able to put pressure on the foot to walk in a flat bottom surgical shoe. Thought I would tell you all this because, when my ulcers get extremely out of control the services of a plastic surgeon has been very valuable to me. Also just before the graft procedure, the wound center people noticed that my pulses on the right leg and foot were not good at all. I had a Angiogram with 2 stents placed in the right leg to open the arterial blood flow to that leg. Going forward I should have much better healing in that leg and foot. Just to say, have your pulses checked ,or even a doppler test done on your lower extremities just to be safe.
Would love to hear what others know about autoimmune problems and how they may be related to LV. Do any of you see a Rheumatologist? Take care, Zenk
Thanks! This sounds like good advice, will ask Dr. to check blood flow in my lower leg next time I am in.
I have an appointment with Rheumatology next week. I was recently tested for Lupus and the test was negative. However, I did get diagnosed with diabetes. *sigh* I am wondering if anyone else has diabetes with LV and how it has affected the healing process. I did started back on the Xarelto and it did seem to help heal the ulcers last time and I was in remission for over a year. Hoping I have that same luck now.
Hi Andi, Glad you are continuing to look for the underlying reasons for LV. I know diabetes can impede healing due to blood vessel sclerosis. If your diabetes can be controlled, perhaps you may see an improvement in the blood flow to your ulcers and help slow development of new ulcers.
I don't know of any connection between diabetes and LV. my docs always are doing a doppler test on my feet to check for blood flow problems. Have you had a doppler?
Computer problems today. Andi, so glad you could get back on Xarelto.
Yes. They have done a dopplers on my feet. I have also had ultrasound from the groin to the foot. My feet are not swelling anymore since I have been treating for the diabetes. We believe it went undiagnosed for some time. My blood sugar levels were off the charts high and we are bringing them down slowly but not without their fun side effects. I am hoping the Xarelto will help in healing with both the LV and Diabetes. I don't believe the two are linked though. I just have the luck of bad genes in the family with Diabetes. It gets frustrating when I get treated and diagnosed with something it is lifelong…. Just once it would be nice to go the doctor and it be one and done. I know we all live with this disease and it definitely has its lows. I can't believe I didn't look for a support group before now. It just feels good to be able to share experiences and lift each other up in ways that probably nobody else can.
welcome to the group!
Hi! I'm not sure how this works so forgive me if I post in the wrong the place. Over a year and half ago my right ankle was red, hot and swollen. I thought it was due to some ongoing orthopedic issues and went to see a sports medicine doc. Long story short, I have seen two sports med docs, two orthopedic surgeons, two rheumotologists, two dermatologists, a cardiologist, had two MRI's, several ultrasounds, and several biopsies. After several ulcers broke open (and made life unbearable), I begged for prednisone (the only thing that had worked to that point). I took that for several months (the ulcers healed). I weaned myself off and had one more biopsy that came back with a diagnosis of LV. The doctor started me on the generic of Trental (can't remember the real name). Although, i haven't had any ulcers in several months, the swelling and redness are still spreading. I feel like there's more going on than just the LV. How do I find a doctor who has treated this before? Any chance my foot will ever look normal again? Any chance I will be able to be active again?
Any help is appreciated!
Liked by Colleen Young, Connect Director
I'm in New Zealand and so a very different health care situation. Trental aka oxpentifylline did not work for me, I got more ulcers and I reverted to 300mg aspirin only. I hope someone in US can help you. My LCV took 16 months to heal and I had 3 mths free of trouble still taking the aspirin , then wham 15 July overnight I got spots from end of toe to top of leg. Diag a week later as Leukocytoclastic Vaculitis, the spots eventually went and some on my feet turned in ulcers. 23 July I stopped the aspirin and I am now on Cochicerine, so far so good.
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