I was diagnosed with primary Polycythemia with a Jak2 positive test (July 2012) I have had 12 lots of blood taken (12x480ml 1 per week) after diagnoses and further blood taken over a period of 12months (3x480ml 1 per week) when required. I also started chemotherapy in tablet form.
My symptoms are in the main. itching . fatigue. painful joints and limbs. tingling in the feet and hands. pains in the legs. also night sweats, most of my blood counts remain slightly high
The question I have is in two parts the first.
Will I ever feel well again and not fatigued?
The second is more complex
Is it possible to tell if the condition is worsening or is it staying the same (I know there is no cure) I often feel that the ‘cure’ is worse than the Polycythemia . I have had several infections over the last year, I am putting this down to the drugs?
The doctor have given me high levels of antibiotics to combat the infections. Is this the norm? or is this the condition worsening? How do you tell that you are in fact getting worse when you already feel terrible.
All the best and many thanks