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palmar-plantar erythrodysesthesia and ET
Blood Cancers & Disorders | Last Active: 1 day ago | Replies (3)Comment receiving replies
Were you started on that dose oh HU or was it increased gradually?
I was started on 500 MG per day. It took me about a month and a half to adjust to that then it was increased to 1000 MG on weekends at 500 during the week. This really threw me off-balance – – severe visual disturbances, very sore tongue and itching, so was reduced back to the original dose.
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I was started on 500 mg per day, then up to three extra per week after a year. Been on that dose x 6 years, no problems. I don't know if the PPE is a function of long-term HU use or platelet spikes (I go above 500 on occasion, but usually between 430 and 475).
Hematologists basically only care about your blood numbers and anything that might be life-threatening. This is different if you are seeing an MPN specialist; they like to get into the weeds. But regional oncology clinics usually have overworked staff caring for too many acutely ill patients, and they can be dismissive of people with nuisance complaints.
At least the nurse didn't tell me it was all in my head. The erythema and itching problems are in the literature for MPN patients. But she didn't bother noting the problem in the notes, just said that "patient states she feels fine." Grrr.
Ugh, sorry for venting.