Livedoid vasculopathy

Please present newest post for Lividoid Vasculopathy first. This would make it easier for patients to find latest information. Thanks, Zenk

Hi @zenk, thanks for that feedback. Good news! We are currently in the process of making that change to the forums. Soon you'll be able to read the discussion threads from newest to oldest or choose to read from oldest to newest. Stayed tuned.

After 4 years, constant hospitalizations, home health wound care, threat of amputation, intense pain, several surgical debridements, 3 hospitals and 9 specialists and even having a port put in my chest; I was finally diagnosed with LV. My ulcers started at the size of a dime in between my 3rd and 4th toes. (They were always on the same spot on both feet.) They became baseball sized and the borders and my toes and spots on the bottom of my feet were black with eschar. Two months after the diagnosis, I was treated with IV IG (3 to 4 units every 4 weeks). I felt completely hopeless, as I also have Cerebral Palsy and everyone (eventually) in my life was suggesting amputation. Please don’t give up because after 6 months of IV IG, my wounds are closed for the first time ever. It almost looks like scar tissue now, but I don’t care! The rheumatologist who discovered the IGG (immunoglobulin G) deficiency only tried one unit of IV IG and it didn’t work, so we checked it off the list. However, the following month, a hospitalist ordered 3 units. Within a week and a half, both feet were growing tissue! A doctor that had treated me the entire time later told me that she didn’t check my IGG levels because insurance didn’t usually cover it. Mine did. The IV IG is given in the hospital, but Hizentra is IV IG in small doses that can be taken at home via subcutaneous self-infusions, weekly. My first 5 infusions were monthly and inpatient. The last month were the weekly at home infusions (two weeks after the last inpatient dose). Every single month showed improvement (except for the first month with just one unit). I have been advised that I will always need the infusions, but the frequency will vary. I would highly recommend verifying with your doctor that your IGG levels are tested and what the specific results are. I am also taking persantine, 75 mg every 6 hours; but, I honestly don’t know if it has any effect.

Hi AngelsMom. I remember you from a few years ago on a site that I had found helpful with others suffering from this dreadful condition. I was fortunate to have gotten a few years remission but now it is back in full force. Have you found anything that works and or are you in a remissive state. I am going to test some of the CBD oils and hopefully it will help with some of the pain. Hope you are well.
MsMerry

I think they are both the one and the same. At least that is what I read on another site when researching. How are you doing with this now tina511? I am 2.5 months back after a nice remission. I live in Canada and so according to my GP am limited to what I can try.

My GP did the same thing and so I thought it was one and the same. I was just lucky enough to have a surgeon who did the biopsy to find out it was indeed LV. I am in Canada and very little to go on here as well. I was put on Pentoxaphylinne (sp?) and did get relief but now it is back. 🙁

My hat is off to your daughter as I too was a hairdresser with my own business and I had to stop as the pain was too much when standing all day. (One thing they did say later, was standing still or sitting for too long is not good.) I have not heard of this endovenous ablation. Is that similar to having your veins stripped? If that is the case, a surgeon here did that the first time this happened to me after two other failed attempts. It did help but only for a short time...a couple of years for sure. I also had no idea and neither did they of what I was actually dealing with as the diagnosis came later. I am in Canada and we don't have nearly the same amount of information and help as in the US and a few other countries have. Right now I am the only person where I live with this so relying on any help I can get from wonderful people like here.

@angip83 and @msmerry welcome to Connect.

I'm tagging @zenk, and @logansnana, who also have experience with livedoid vasculopathy (LV) and may be able to help you find some answers.

@angip83 you must feel so relieved to have found a cause and solution. Did your rheumatologist explain why the immoglobin G (IgG) deficiency was causing the LV?
@msmerry, you mentioned that you were on pentoxaphylinne, but it stopped working. Has your doctor prescribed any other medication, and if so what are you now using to treat the LV?

Thank you. My hat is off to both you and my daughter. LV is definitely not for the faint of heart. My daughter, Angel, has had three of the ablations done at Kaiser Permanente in Oakland California over the course of the summer. The last one was just done three weeks ago. I am happy to report she is doing extremely well. I shared your post with her and she typed this reply for me to share."Stripping is how they used to do it. Essentially, the goal in both procedures is the same....
To stop blood from flowing through inefficient veins, and cause it to reroute to veins that work better . That being said, how do we keep these efficient veins from going bad? The answer is compression while upright and elevation when you're sitting.
Only time will tell if the laser ablation has proven to reduce the reoccurrence of the ulcers. The only thing I know for sure, is that compression helped me heal and at this point, the stockings give me hope that I'll be able to continue standing behind the styling chair ."
All the best to you msmerry

Hi all with Lividoid vasculopathy, The most helpful medication stated in the literature is Xarelto 15 to 20 mg. per day. It is a blood thinner and is definitely worth a try. You need a prescription . Wish there were more studies on LV.

Zenk