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Livedoid vasculopathy group: Checking in, how are you doing?
Skin Health | Last Active: Apr 13 5:40am | Replies (27)Comment receiving replies
@zenk, thanks for getting the LV group going again and checking in on members. I'm tagging past members, like @gtalan @patientrea @linde @mlemieux @spence to bring them into this discussion.
Past, present and new members might appreciate an inventory of the livedoid vasculopathy discussions here on Connect. There's so much incredible information shared in these conversations:
– Livedoid vasculopathy https://connect.mayoclinic.org/discussion/livedoid-vasculopathy/
– Treatment options for Lividoid Vasculopathy (LV) https://connect.mayoclinic.org/discussion/i-am-looking-for-outcomes-in-the-use-of-blood-thinners-in/
- Livedoid vasculopathy and thrombocytosis: related? https://connect.mayoclinic.org/discussion/livedoid-vasculopathy-1/
– LIvedo Vasculopathy or Livedo Reticularis (whole body face white) http://mayocl.in/2qoA4jr
@zenk - how are you doing?
@ruthnz - did a doctor suggest you try this new diet? Do you mind sharing more about the foods you are avoiding?
@curtismiller – how was your walk yesterday? How is your pain today?
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Hello, my leg is slightly swollen but it feels okay and has not sprung a leak as it has done in the past when I would flex it too much and rip the skin. I remembered a discussion I had with a research doctor about a new drug. I've copied it and I'm pasting the whole thing here, I hope this can help someone!
From Robert Levy
Jun 17, 2019, 9:25 AM
to me
Mr. Miller;
Thank you for your inquiry regarding Vasculera.
Neither Vasculera nor its primary ingredient, diosmin, has been studied in people with your condition. Although diosmin has been used in Europe as a drug for venous insufficiency and all its complications, including venous ulcers, for 40 years it has never been systematically studied for arterial diseases. That said, Primus has received numerous anecdotal reports of benefit in people with ulcers due to arterial diseases though the doses used have generally been one twice/day and the time to benefit generally at least 2 months.
I cannot say with certainty if Vasculera will help your condition but it might be worth a try for a couple of months. This would be what is called an “off label” use since we market the product only for venous disease. As such, you should discuss the use of Vasculera for this purpose with your health care provider. If you opt to do this after consultation with your health care provider, I would greatly appreciate learning of your experience.
Regards,
Robert M Levy, MD
Director of Clinical Development
Primus Pharmaceuticals, Inc.
Please check this stuff out. When I was first labeled as disabled I thought it was great! lay around and get paid not to work. After 6 months the blessing was turning sour and since then I think I've researched and contacted more doctors and science geeks than I thought existed, I hope others are doing the same thing, because this stuff, Vasculera, might be the miracle drug for someone stuck with our ailment!
One quick question, is LV a disease, ailment, affliction? Different Dr's use different terms, what is it??
Thanks again,
Curtis Miller, slightly less depressed in sunny California