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Treatment options for Livedoid Vasculopathy (LV)
Skin Health | Last Active: Dec 14, 2023 | Replies (70)Comment receiving replies
Hi PatientRea, You are further along in your diagnosis and treatment than I am. I am waiting to get into the well-respected dermatologist here in the St. Louis, MO, area. I did verify with her medical asst. she is 'familiar' with LV but will know more when I get there. Thankfully, I have had no ulcers to date. Am hoping they can biopsy from what I do have, which is the dark blue/red reticularis on the back of my leg. I have terrible pain in my leg most nights and some days so I guess I also have post thrombotic syndrome. My story is above. I have found this site and the advice given on it to be most helpful & everyone so very kind. I wish you the very best on this journey and if I can be of any help, just ask.
Replies to "Hi PatientRea, You are further along in your diagnosis and treatment than I am. I am..."
Hi @patientrea @marlene64 @zenk
Nice to see you all discussing options for LV. There's so few of us, it's really nice to meet you all.
Just a small update, I haven't been active too much lately, having some issues with a lot of pain and unfortunately, 3 new small ulcers just opened up on my left leg (two of the on top of my foot). Really angry about this new development, so I asked to be switched back to "Innohep" injections (low-molecular weight heparin), since historically my wounds are better when I take the injections...
But the downside is I tend to get massive bruising from injecting once a day on my lower stomach and upper thighs. It's hard to explain to someone how hard it is to purposely give yourself more pain through daily injections.
Anyone else take Innohep or similar injections with success?
Anyone else get bruising and/or have tips to prevent bruising?
Someone suggested applying ice to the area minutes before injecting.
Cheers!
Martin R. Lemieux
Hi @mlemieux,<br><br>I’m sorry to hear you’ve developed new ulcers and am glad you have doctors who work with and listen to you about your needs. I have taken a similar injection, Lovenox, at different times. I’m fortunate in that I have never had to give them to myself, which maybe has made it easier. By the time I’m done with a series, my stomach is variety of purples, yellows, greens, etc. I’ve attached an article that gives a lot of good suggestions on how to help prevent the bruising from them. When you talk of the pain you’re dealing with, is it from the ulcers themselves or from your veins/arteries? I have found a heating pad provide comfort to my leg pain but perhaps having the ulcers changes things.<br><br>It’s okay to feel angry but don’t let it drag you down. You are an inspiration to those of us still trying to figure all this out. Please take care.<br><br>Marlene
I wonder if you would be able to try Xarelto in place of the injections of bloodthinner? Sure is a lot easier on you to take the pills.
Take care, Zenk
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Hi @marlene64,many thanks for your reply.I read with great interest your story above and I believe there will be good and encouraging news for you after your visit to the specialist.I do agrree with you that this site is very informative and helpful with kind people willing to help.I m really sorry for your night pains.Please keep us informed about any therapy you will be given.
Take care!