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Anyone living with Essential Thrombocythemia with JAK2?
Blood Cancers & Disorders | Last Active: 10 hours ago | Replies (722)Comment receiving replies
I've seen lots of comments here about itchy, dry skin, and unfortunately I experience it too. Alas, this is a "gift" of ET. Here's what Google AI has to say:
Itching is a common symptom experienced by people with essential thrombocythemia (ET), a blood disorder characterized by an abnormally high platelet count; this itching is often referred to as "aquagenic pruritus" as it can worsen significantly after hot showers or baths, and is believed to be caused by the release of histamine from abnormal blood cells within the body.
I've mostly switched from hot showers or bath to bathing with a washcloth at the sink. I have lotion bottles everywhere.
I guess the itching distracts us from the headaches . . . .
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sandym@arn.net
I am having increasing trouble with my feet. I have read that it is a problem with ET. I have been to two podiatrist and honestly, they address one problem but they don't seem to know much about Essential Thrombocythemia. I have had it for 11 1/2 years and am on 1000 mg of Hydroxyurea daily. I am about as well controlled as I am going to get at around 500,000 platelets.
I have had two hip replacements, L4-5 laminectomy with fusion, and a host of other problems. Is there anyone out there suffering from foot burning sensations, numbness, tingling, pain in the feet? Just curious. I cancelled my appointment with the orthopedic doctor when I realized that my problems is one of the symptoms of ET and few of the doctors I have been to know little about ET, except for my oncologist.
Thanks
EstrellitaMorris