Livedoid vasculopathy

Hey everyone! I first want to say that who ever is dealing with this, I am sorry and I am feeling the same frustration.
I started showing symptoms of this about 3 years ago or more. I first remember being diagnosed as a rash of some sort from shaving. Then I was very sure it wasn't so my family doctor sent me to a dermatologist specialist. I was with her for 2 years and she tried creams, and everything. She tried a variety of medicines on me including methotrexate, and the last one was pentoxifylline. I tried all of these but nothing has really helped. It is on both lower legs/ankles and now it is spreading to my feet on the top sides close to the ankle bone.She had sent me to a cancer center that is in my town in Iowa and the blood doctor was very confused as to why my dermatologist sent me there. She ran tests and she told me I don't have cancer so she was confused as to why I was there. I gave up for the last 3 months. I do not know what to do anymore. I am 23 years old and I have had thyroid problems in my past, and I do have Grave's Disease, so I do not know if that would make a difference. I feel like my doctors sort of gave up because they did not know what else to do with treatment for me. Will you please get back to me... someone?

Hi steph, Did you find out what was causing your rash? Zenk

I do not have a history of clots. I take an aspirin daily as directed from the dermatologist.

Hi Stephanie, Yes people with Lividoid Vasculopathy have reported having ulcers that itch very badly. I have had to put benedryl cream or spray on the ulcer or at least around it to stop the itching . I have not heard of a rash like you describe with LV. Check with a dermatologist for best guess. People with LV unless they have been diagnosed with a coagulation abnormality are not at risk for clots. Do you know if your blood clots abnormally? A blood test would tell. Blood thinner is the treatment of choice for LV ,so with your other condition , your doctor would have to determine the safety of blood thinner. Keep in touch, Zenk

Not sure if this is still an active blog.
I'm 23 years old and was diagnosed with this a few years ago.
I'm wondering if anyone has the ulcers that itch extremely bad? Or if they have ever had a rash that spreads to their thighs, forearms, buttox, back and stomach from this condition?
Also, how bad is the risk for clots?
I am trying to be on birth control with estrogen for PCOS but I am apparently at too high of a risk because of this condition even while taking aspirin.
Thank you!
Stephanie

Hi Ms. Merry, Sorry about your current flare. I always get the ulcers in the same places also . Feet and ankles, especially over boney areas. Evidently, the micro vessels in these areas are blocked by fibrin and oxygen rich blood can't reach the top dermis of the skin. Glad you are seeing you GP next week. If you haven't tried Rivroxaban 15 mg. yet it is surely worth a try. Once I have a very deep and painful ulcer good wound care is essential and I have had to be on MS contin for pain especially at night. Topical cream with Ketamine at least 10% and Gabapentin in it was a life saver last time around. I finally had to have a skin graft over my right ankle in sept. My foot was in danger and they had to operate. Maybe Rivroxaban won't be as expensive in Canada. Please let me know how it goes at the doctor. Thinking of you,stay strong. Zenk

I am so happy that this is working for your daughter and thanks for sharing her post. Compression is not an option for me as the ulcers are too large and even a sock or the slightest touch sends off deep pain signals. It was after this procedure was done that they discovered it was LV and not a venous problem. The ulcers keep coming back to the exact same spot on my foot/ankle. I am out of remission again and can manage only about 4 hours of being up or sitting and both feet again and the same areas with what looks like a new one busting loose. ( Gotta keep a sense of humor on this ) 🙂 Elevation, I try to do consistently throughout the day. I did have a DVT and I now know that this is also an indicator. The other thing that was noted about a year before the first time it happened was my feet were turning bright red and swelling. ( a client pointed it out) I had had this happen when I was in my 20's and they couldn't figure it out or why it was so painful.
They made mention of the fact that LV is very rare and that most people are misdiagnosed for at least 5 years when it first happens. I for one can attest to this. Anyway, I just wanted to get back to you and apologize for being so slow in replying. I had not been here in a bit and not knowing too much about forums forgot to check in. Happy Thanksgiving coming soon for our American neighbors! I hope it is a wonderful time for all.
I do have to say thank you to the two wonderful South African Surgeons who took it upon themselves to do more. Unfortunately, they are no longer in my area for further follow-ups. I am grateful that one of them said all the others (specialists I had been sent to see) were wrong and did the Biopsy and sent it away. That takes courage to do.
I am sincerely grateful for this forum and any others I have yet to discover. No one can know or relate to this disease unless they
a) have it
b) live with someone suffering from this...

Keep on researching and sharing when you can. Thanks to everyone.
MsMerry

So just an fyi I have started a group page on face book called Livdoid Vasculopathy support, for those of us on Facebook. There are people from around the world in this group. We discuss our stories and help each other out! We'd love to have you on there too!

I am so sorry I missed your post, Ethan. I am not used to the forums and how they work. No, my Dr. has not changed any meds nor has he done further testing to find out the underlying reasons. Mostly I am on my own so really really appreciate all of you guys! I see my GP again this Monday and hoping to go in armed with some information for him. We do not have the kind of specialists some of you have seen here. I have actually just started trying CBD Oils as they are now legal in Canada. I am staying as positive as possible but with the pain, I am wearing down quickly. I cannot get anything on my feet other than flip-flops or flat shoes that don't touch the top of my foot or ankle. We are in snow now...LOL, so this is a really fun time.
I just did some more research today and of course, it brought me back here so that has me smiling. I saw Rivaroxaban being tried and the report was dated 2018. I am hoping my Dr. will switch me to this. I think if memory serves me, it was in Brazil.

@zenk I have had LV for over 20 years and am Factor 5 Leyden, biopsy diagnosis about 10 years ago for LV. You mentioned an article in Lancet (1916) about Xarelto as a possible help for LV. If available, could you please give me the issue or page number of the reference? Wound care in ND isn't used to seeing LV cases and the current option they used on me (Apligraf) did not work due to an allergic reaction. I have been on warfarin several times for blood clots, and currently take 2 regular aspirin a day to keep blood from clotting. I think wound care will be transferring me to rheumatology or hematology after today because they have run out of options for treating my LV.
Thanks for your help, Sheila Sears Wichmann