Hello, something I do for the pain is ice packs. It’s not a long term relieve but it helps. Sometimes I feel like getting in the bathtub full of ice, but ice packs help with the pain from LV and Fibro.
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Thank you, it’s nice to see that there is more info about LV, The doctors haven’t put me on blood thinners yet other then aspirin 325mg (was 81mg). I have been getting treatment from my PCP, my Rheumatologist that’s been treating me for Fibromyalgia, a Dermatologist that treated me 14 years ago for LV and those at the Hospital Wound Care. I do have pain most of the time but not all from LV, I have been taking Prednisone and about 4 different antibiotics 2 to 3 weeks at a time for the last 6 months. For the wound treatment I was using a wound vacuum (lots of fun) I was so happy when they told me I could stop using it. but it helped, now I have a 3 layer compression sock. I think I’ll be asking about some other treatments, some of the meds are not so good for long term use.
Sorry I’m not a doctor, The doctors have called it vasculopathy but for some time we been calling it vasculitis .. my bad.
As far as the diagnosis, There has been lots of blood and other samples sent to the lab and my Rheumatologist and a Dermatologist have examined me as well as those at the hospital wound care.
Hello, mostly the prednisone as much as 60mg then less each week till 5mg. Been on this about 4 times so far this year, I don’t recall the names of them all. I see that more doctors know more about Vasculitis then they did 14 years ago, back then I had one doctor that heard of it and had to get his med books to figure how to treat it and he did a good job, this time I asked if he was ready for round #2. This time around it’s not going into remission any time soon.
They also found some damage in a vein in left leg where I had a clot years ago, The vasculitis may have also have damaged this vein too.
I had it for 14 years now, large wounds on left shine and ankles. At the first of this year it came out of remission and I still have a deep wound on my left leg and it’s very painful. I been on prednisone and four different antibiotics and going to wound care at the hospital and used a wound vacuum and now pads on the wound and a 3 layer compression sock. This Livedoid vasculitis is very painful.
14 years ago I had my first vasculitis scare, had a bad rash on both legs then large wounds on my left leg and small wounds on the right leg.
It took three months on strong meds to heal up and the vasculitis went into remission.
The first of 2017 it started again, 6 months and I still have a deep wound on my left leg (nothing but a small rash on the right leg) I been on strong meds and wound care, it’s getting better but very slow. I’ve been told it’s Livedoid Vasculopathy or Vasculitis. It’s very painful and very rare and I’m very tired of having it. A doctor told me this is about the only type of vasculitis that’s painful, 14 years ago the large wounds had no pain but this time it’s very painful.