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Blood Cancers & Disorders | Last Active: Oct 16 9:36am | Replies (142)
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Thanks. Her doctors have said doing NOTHING is an alternative and that the other medications have more side effects. They also say she is on the lowest dose to control her platelets. Since this is the only option, we are hoping to learn coping skills from patients of this rare illness. Thanks!
Replies to "Thanks. Her doctors have said doing NOTHING is an alternative and that the other medications have..."
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Hi @pjrockz88 Your poor mom sounds like she’s really having a tough time with the Hydroxy she’s taking for ET. From conversations with other members in the forum, it’s generally really well tolerated. However there are some people that have unpleasant side effects, like your mom.
There are other treatments on the market, besides Hydroxurea, for people with myeloproliferative diseases such as ET and PV.
These three are listed as second line drugs when Hydroxy isn’t tolerated:
~Busulfan https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5995877/
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~Pipobroman
https://pubmed.ncbi.nlm.nih.gov/11886392/
~Anagrelide
https://pubmed.ncbi.nlm.nih.gov/27497846/
I can’t imagine why her doctors won’t consider switching your mom to one of them. She’s already experiencing debilitating side effects from the HU…difficult to imagine how that would be worse?
Because our bodies don’t process meds as efficiently as we age, it’s easy to be over dosed. When you say your mom is on the lowest dose possible, do you know what her daily dosage is of Hydroxy?