I am new here. My husband has unclassified MPN, no mutations, no Philadelphia chrom. Doesn't fit in any category of ET, PV or MF, so it makes finding information close to impossible. Even the dr says little is known about this type. His WBC was 258,000 and hydroxyurea brought it down to 68000 and then after a month stopped working and now it is back up to 144,000. Has gotten 6 units of blood as his red blood count is so low. THe dr wants to switch to Jakifi but our insurance company denied it. Dr says this is common and he will find someone to fund it since it is so ridiculously expensive. Does anyone have this kind of MPN, know what treatment works, any prognosis? My husband is so fatigued, nauseous one hour and not the next, legs and arms burning (guess it is the bone marrow), horrible sweats, headaches, life is horrible and he is only 64. Help if anyone has any info that might help.
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