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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I have seen vascular and I have good blood flow in my legs and feet. I take Pentoxifylline and a baby aspirin. I can handle the LV. It’s the Raynaud’s that is killing me.
I was diagnosed in March. Since then I have had a severe outbreak, followed by a bout Raynaud phenomenon in my feet. I swear that hurts worse than the ulcers on my legs. Has anyone else had this issue, if so how and what made it better. It’s to the point that I have trouble walking and keeping my feet warm. I live in Florida where I sit inside because I am to cold to go anywhere.
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Have you seen a Vascular specialist ? They would do an Ultrasound to assess the blood flow in your legs and feet. Do you take blood thinner? Keep in touch, Zenk
I was diagnosed with this a year ago, I kept getting merous ulcers on my legs and ankles for 2 years before that, I was diagnosed with seronegative RA, so I had infusions of Rituxen in Dec and the 2nd on January 5th. By mid January I broke out in a rash on my entire body with and itch.
My legs and feet then swelled, the skin on my feet, top and bottom started to peel. The only relief I got was feet on the floor. I finally got an appointment at Mayo in Rochester. They diagnosed me with Livedoid vasculopathy, and APS.
I did 6 week of Lovenox injections and am now on Eliquis blood thinner. So sorry to hear what you are going through, sending prayers and hugs to you
Hello to everyone and Happy New Year to you all. I am currently in an outbreak which is showing signs I have never had before and now into my 3rd year. I have one on my ankle where the others were but this time my foot is swelling so badly my toes do not touch the floor and my arch is swollen and the skin forming large blister like areas…I say blister-like because they look like a blister but do not act as one. There is no fluid in the pocket. It just forms a hardened area that is 'punchy' to the touch.
They start to peel off as well as me peeling them. I have never seen this happen before and the pain is relentless with raw skin. There is also swollen pockets just below the ulcer area…I guess under the ankle. The pain feels like it is coming from the large ulcer. (which is trying so hard to heal and I can say it is not nearly as deep which is hopeful)
Any Drs I have seen have never seen anything like this, including my GP. All that is being done is pain meds and Trental 3 times a day. Just an added note, I am in Canada and we are restricted to a lot of meds. There was one Dr. who indicated that it may be autoimmune related but that was as far as things went. ( He was a visiting Dr. to our small hosp.)
So, today I am reaching out to see if anyone else has had anything similar happen in a break out with the arch of their foot. Or anything new that they have found to help get thru this. I'm sorry but in my 3rd year I am starting to get really frustrated. Tears come easy with the pain now…in part due to being so frustrated with the length of time I think and no solutions.
Thanks in advance for any help or ideas anyone might have. Huge LV (((Hugs))) coming your way.
Hi Ms. Merry, Have you been able to try blood thinner medication ,like Xarelto? I assume your doc has checked to see if you have venous insufficiency in your swollen foot ,like an ultrasound test to see if you have blockages in that leg. You can have skin changes in your foot if the blood is not getting to the dermis . A dermatologist would recognize it but a vascular surgeon would know for sure. Please let us know what you find out. Your friend, Zenk
I was with Livedoid Vasculopathy in March of 22. I had been dealing with painful ulcers on my lower legs that would not heal. I had taken 2 iv's of Rituxin for my RA, I had a reaction to it, severe pain, itching and rash. I was hardly able to get out of bed. My Dr sent me to Mayo Dermatology, they diagnosed me right away. I also have APS and Seronegative RA I am on prednisone, Eliquis, Methotrexate. Plaquenil and Leflunomide
Went to half dose of Eliquis and my feet started to hurt like they did before. Back on my full dose and are getting better. They hurt and burn, but at least the swelling has gone down. I still have days that I can hardly walk, and the fatigue, always tired and weak
Good Morning, I also have this rare condition, it can be very painful at times, I have had it since 2020 just after lockdown, not sure why it happened but it did, it started with sores on my feet and lower legs, not bad to begin with but as time progressed it got worse. I went to my doctor and they then sent me to dermatology at Treliske Hospital Cornwall. The Doctors really had no idea what it was and the cause, they took swabs and blood tests and a couple of biopsies, but to no avail. I was given Dermovate cream and Dermol 500and 600 as they thought it was venous eczema but this irritated the skin. I was also told to use compression stockings which also caused more pain with the compression. I was given Prednisolone and antibiotics and the open areas were dressed at my surgery, this went on for weeks possible diagnosis was Cutaneous Vasculitis. I on two occasion ended up at A&E as I had breakouts over a weekend with weeping sores and very painful.
August 2021 the likely Diagnosis was Livedoid Vasculopathy and I was weaned off Prednisolone and put on Methotrexate, but coming off the Prednisolone my condition flared up and was put back up to 30 mg again, eventually I weaned my self off, it was a painful and uncomfortable experience.
12 months ago I was put on Methotrexate and now I am on nothing as I was still having breakouts and the medication was not working, so the Doctor and I both agreed to stop all medication. I was fine for a couple of weeks and the sores started again so back to my Doctor and I was given antibiotics for a 3 week period, there was some improvement but when I stopped using them it started to break out again. The Hospital has prescribed Rivaroxaban 20mg a blood thinner but I am reluctant to take it until all medication has left my body.
At present I am dressing my open wounds with Manuka honey which seems to help the healing process, long term I will have to wait and see.
Hi Angel1234…and I am also sorry I did not see your post earlier. And I am also sorry you are having to deal with this like the rest of us. In the very beginning I was so hopeful that after they put me on the Pentoxifylline I would be good to go. I was for a few years and that was wonderful considering I had had two huge outbreaks. I just say huge because of the size of the wounds and the length of time trying to deal with it.
But as most of us know, there is only a remissive state for each of us and how long we get in unknown. I think every time I have gone into the remission I get so excited that I can walk and wear shoes I forget the intensity of the pain. I think maybe that is a good thing knowing now that the return can be around the corner so to speak.
I wish with all my heart they could get to the bottom of this. I saw a visiting Dermatologist to my small hospital and he thought it might be auto immune related but pretty much every test was good. I have a DVT and I understand this is part of this and he did as well.
As to any compression…NO! Too painful and how do you get those things on over large…baseball size open wounds anyway. No this is not venous to my understanding anyway. Usually there is no pain with a venous ulcer and that is where so much of the confusion came in. Also the Doppler tests were all clear with a solid pulse in my foot.
I have tried the Manuka honey and silver dressings but the pain increases and it is unbearable so we don't try those anymore. I am actually keeping the larger one very dry even changing it every day and it has helped. I am starting to see some pink skin as it fills in. ( It was very deep and long) The ridge around the wound is also becoming less prominent to the eye and to the touch.
I have only had to go on anti biotics I think 3-4 times in my 17 years so that is a plus and I have also done most of my own dressings. I am seeing wound care now…just once a week to have more eyes on things to monitor it. The nurses also act as a go-between for my Dr.
I do not think I could get the Rivaroxaban here in Canada but Pentoxifylline is similar as in a blood thinner. My question is can the body become immune to the medication and stop working? I wonder being as I have had two+ outbreaks since being on it. And is it a good idea to stop taking it periodically if that is the case.
Maybe someone here can help with it. Anyway, it is very nice to meet you…sorry you have LV and I look forward to hearing from you. I think it helps each of us if we can share with each other. At the very least we know we are not alone in this journey.
@aimeenc, please accept my belated welcome. I think other members with LV like @cwhorton @msmerry @zenk @patientrea @cleverrover @merrycat will empathize with your statement "I've really been struggling lately & my family just doesn't understand at all what I go through on a daily basis."
You sure have been proactive in forming a team of specialists to be on YOUR team. Good for you.
For your question about Medicare covering a wheelchair or scooter, I suggest callling Medicare directly or getting help from a social worker to navigate the insurance maze.
I'm so sorry to hear that your husband, your rock, and his support is waning. It sounds like both of you had high hopes that LV would get better and normal life would return. Reality may have different plans and acceptance is really hard — for both of you. Might he be willing to seek counselling with you from a social worker or qualified marriage counsellor?
I am so sorry that I did not see your post sooner. I know just how you feel as those around me just don't understand nor do they 'get' that there is no cure! I have been in another nasty outbreak since COVID hit and painful doesn't even touch how raw this can be.
I got out my crutches to help me shift the weight off my feet so I could try and stand for more than 30 min. Helped a little but this one is just not letting go. I was put on Pentoxifylline years ago after I was diagnosed. I did finally see the ulcers close but they came back hard and fast.
There is no way to tell it other than by just being there for each other and reaching out with hugs and understanding of what each other is dealing with. Being alone and lonely in this disease is really hard so we need each other more than ever.
I hope you are doing a bit better now. I am still not but hopeful…okay lying…frustrated that I seem to be going backwards! 🙂 Please reach out if you feel like chatting or need a hug. Not far away…
Hi angelasmom,thanks for sharing with me what you’ve gone through I know it’s not easy to live with LV. I’ve had LV about 6 years but was just diagnosed a year ago. Back in December 2011 I was hospitalized because I had a mega flare up! It was so bad that I got gangrene I had 3 really big ulcers the size of baseballs and I could not walk because of the pain and swelling.Thank God for a Dr. Named Dr. Marc Hare, he works at the center for wound healing and hyperbaric medicine,he went to see me at the hospital. I go to see him once a week for the ulcers and he diagnosed the LV, I also see a hematologist every 2 weeks to check my inr as I am on caumadin. In the beginning I was seeing a vein doctor and had some surgery done but as you said this disease has no cute yet, only the symptoms are delt with not the problem.i pray one day we may be cured of this disease, at the moment I am also in remission, oh and I also had skin grafts put on my ankles.
Hi Alejandro. I read your post above and hope you are still here and doing well. My ulcers on my feet and ankles also get to the same size as yours. I had not seen anyone else with them this big so wanted to reach out and say hello.
I don't post photos as they are pretty gross and not everyone can handle them. I was misdiagnosed for years…could be 8 or more and it was hell. I don't need to tell you how that is when your foot can't even bend and just walking is difficult.
I know there is no cure, but here at the Mayo Clinic they seem to at least look at other ideas or try new things for us.
I live in Canada and so far only have found one other on the other side of the country. We are small but vast between large cities and other provinces. Like a state if you are in the US.
Would love to hear from you and if you are doing okay etc. I am in another nasty outbreak which has now lasted over 21/2yrs. The pain is the hardest to deal with.
Sending a virtual hug your way because when you have something like this we all need one.
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