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Blood Cancers & Disorders | Last Active: Nov 3, 2023 | Replies (247)
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@msmerry, Livedoid vasculopathy is sometimes also referred to as ‘livedo vasculitis’, ‘livedoid vasculitis’ and ‘livedo reticularis with summer ulceration’. I'd like to bring in @prairiesmoke @angelasmom @mlemieux @zenk @patientrea @cleverrover to see your post and possibly answer some of your questions. Mlemieux also lives in Canada and may have some insights about care in Canada.
You may also be interested in this discussion:
- Treatment options for Livedoid Vasculopathy (LV) https://connect.mayoclinic.org/discussion/i-am-looking-for-outcomes-in-the-use-of-blood-thinners-in/
Pain is wearing for sure. Do you have a concern about taking Trental? Is it still working for you?
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Thank you so much Colleen, I really appreciate your reply. I have been in an outbreak again for 11 months now on one and I can't quite remember when the second started. I think perhaps 6 months is close. It would be so helpful hearing from someone else in Canada. So few Drs. know of this. I will have a look at the treatment options for sure. I have only seen one other Dr. in B.C. who comes into our Hosp. a few times a year who knew of this and he did say Trental was my best bet. That would have been almost two years and my outbreak at that time had just healed. And yes, if we didn't have this sometimes horrific pain it would be much easier to deal with. 🙂