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Polycythemia: Are you asymptomatic?

Posted by slk2421 @slk2421, Oct 9, 2022

Any idea of % of polycythemia patients that are asymptomatic?

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pelicanpoint | @pelicanpoint | Jul 24, 2025
In reply to @loribmt "@pelicanpoint Hi Tom, with as much walking as you do, having a sore on your heel..." + (show)
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@pelicanpoint Hi Tom, with as much walking as you do, having a sore on your heel for 10 months is pretty concerning on multiple levels. From a little research this morning, there have been some rare, documented cases of ulcers in lower legs and feet associated with longterm, higher dosages of HU. Again, rare. Apparently there can be changes in the cellular structure for normal cell repair which may interfere with usual wound care treatment.

Your doctor took you off the hydroxy for now but it’s important to have the wound tended by a professional. Make sure they’re aware of the Hydroxyurea involvement. Have you consulted with a podiatrist or dermatologist?

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Thanks Lori, yes I am having it cared for by the professionals. I have switched to just gauze yesterday I t looks much better today as it's not wet from a traditional bandage .... Knock on wood.

Tom

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christina3444 | @christina3444 | Jul 24, 2025
In reply to @pelicanpoint "PV diagnosed 4 years ago I am on 1000mg Hydrox keeps the Hematocrit , Hemoglobin and..." + (show)
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PV diagnosed 4 years ago I am on 1000mg Hydrox keeps the Hematocrit , Hemoglobin and platelets in check no problems with side effects until about a year ago . I walk about 2000 kms a year gets my thick blood moving and I just feel a whole lot better basically . Any way I developed a sore on my heel 10 months now and it just won't heal. My Hematologist took me off the Hydrox 3:weeks ago and booked me in for 6 phlebs had three. Well this wound is still not good, at my wits end. Anybody shed some light. It's about 3 cm by 3 cm. Tom

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So, I’m wondering if you’ve ever had any prior problems with a wound healing? I’m sure if you are a diabetic you would have mentioned that. And, you didn’t specifically blame contact with your footwear causing the original wound.
You need You need a wound care specialist. I used to handle claims made against nursing homes where both decubitus and stasis ulcers occur with unfortunate frequency, most decubs usually from a bad combo of diabetes and lack of movement. Very often a wound care specialist nurse would be called in and accomplished what no one else could.
If it were me I would ask my MD for help finding one or for referral to a dermatologist to find a wound care specialist. Hospitals also usually have dedicated wound care departments. Maybe Lori an add resources for such a specialist?
Please do not delay in finding help to heal that wound.

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pelicanpoint | @pelicanpoint | Jul 24, 2025

Thanks Christina , I have been to the wound clinic and had some professional care. I think yesterday was an an anomaly I had used a commercial bandage and the wound looked wet. Went to just gauze last night and by golly looks a bit better today. Thanks for your response. No diabetes and no history of this happening before .

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