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Hydroxyurea and ankle ulcer

Blood Cancers & Disorders | Last Active: 5 days ago | Replies (6)

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@loribmt

Welcome to Connect, @wlm7615. It seems your suspicions were pretty well founded with the rapid healing taking place after stopping the HU. This is evidence you should take to your hematologist. Though, if you’ve felt dismissed in your previous discussion with your theory, that can surely impact your feeling of being able to have a productive chat with your provider.

But it might be worth talking with your hematologist so that you don’t have to go through the process of changing doctors. Ask for a consultation, present the facts and talk about other alternative medications for ET which may help to keep your platelets at a safe level. Just because the potential of leg ulcers, though rare, can develop in people on high doses of 2 gm or so daily, doesn’t mean the medication couldn’t build up in your system to a higher level to cause similar issues. As we age, our bodies process medications slower which can lead to changes in retained levels. I’ve experienced that with another drug unrelated to your issues. But with a bit of sleuthing, my doctor changed dosages to bring the toxic level down to normal. But it takes a doctor willing to work with you. If you’re not finding that with this current hematologists then definitely seek a second opinion.

Are you in an area with options for a 2nd opinion? Do you feel you can talk about this with your current hematologist?

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Replies to "Welcome to Connect, @wlm7615. It seems your suspicions were pretty well founded with the rapid healing..."

Thank you for the prompt response and useful information. You have sensitively noted my frustrations with my hematologist; I have not gotten a satisfactory response from him in several weeks, despite several requests. He's so busy, I haven't seen him in approximately 4 years, just his nurses. I am actively seeking a second opinion in this area. Hopefully this won't take too long. If that doesn't work, I may come to Mayo in Jacksonville.