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Livedoid Vasculitis
I have recently changed physicians and the new doctor took me off of my Carleton for my Livedoid Vasculitis they say it’s a “new guideline” what does anyone else take for their Livedoid Vasculitis? I also take Vasculera this seems to help me not get so many ulcers and I use Trental and a baby aspirin. I am wondering what everyone else gets treated with? Also it was diagnosed by the dermatologist then my Rheumatologist gave some meds for it and my prior family doctor gave me Xarelti….which doctor is really supposed to handle this disease? Most of them have to look it up they don’t seem to be familiar. With it. Also they keep wanting a punch biopsy from the ulcers but no sooner do I get an available appointment for wound care but then the ulcers are too healed. This is so overwhelming I also have many different autoimmune illnesses which just compounds everything….not sure if I need to be so overly concerned about the Carleton removal or not?
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@deb8 Good morning @deb8 . Ive not heard of this autoimmune disease before, but there are so many new ones being diagnosed, i cant keep up with them all! How long have you had livedoid vasculitis? What other AD do you have? Does 1 doctor manage all of them?
I included a link to the rare disease network which may give you more info.
https://rarediseases.info.nih.gov/diseases/12784/livedoid-vasculopathy
I can understand your worry about being taken off of Carleton, especially if it was helping you. Did the doctor give any reason other than “it’s a new guideline”?
@deb8 Hi, I just joined this support group and am looking for answers for my family member who has LV. She has had issues for about 4 years, but only diagnosed in this last year. Treatments have included penttoxifylline, baby aspirin, doxycycline (for its anti-inflammatory effect) and infusions with her hematologist. The combination has finally allowed her about 2 months without ulcers, but the hematologist had to cut the infusions down to 1 time every 3 weeks, because Medicare won't cover ,them and she has flared again. We have had a time figuring what doctor to call, but finally getting a plan in place that seems to work. This disease is relentless and very painful and limiting. If there are other's out there with his, I would love to get some real life help on how you prevent flares or if they are just going to happen no matter what!! Thank you in advance.