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With Myelofibrosis I have good days and bad days - is this normal?
I am 82 years old and have myelofibrosis. Some days I feel okay, but on other days I am wiped out, lethargic, low energy, wobbly, and generally feel unstable and weak. So far, the good days still outnumber the bad days. Do other people with myelofibrosis experience these swings in how they feel?
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Dear @geo84
Yes - for me it seems every afternoon I need a nap and I typically go to bed between 8 pm and 9 pm. According to my research hemoglobin is lower in the afternoon/evening. This lower hemoglobin causes fatigue. Best wishes
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2 ReactionsMy experience is Yes. Over time, as it progressed I had fewer good days.
I was put on Vonjo and over time I got my life back, for the most part and felt dramatically better.
You might discuss this with your Oncologist. It may be time to make a change to your medication?
I'm sorry you are going through this.
Wish you better days ahead.
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1 ReactionI am 75 and was diagnosed with Myelofibrosis Feb of this year: so far, the physical energy swings have not been extreme, but the mental adjustment has been taking some time. I wish you the blessing of improvement in your energy levels. How long has it been since you were diagnosed with MF?
Thanks for your response.
I was diagnosed in March of 2021 with ET, and in May of 2025, with a new biopsy, I was diagnosed with Myelofibrosis. Thus far, the condition is manageable with Hydroxyurea. The periodic energy swings concern me.
Interesting that hemoglobin would drop in the afternoon - I, too, feel tired frequently and need more naps than I ever have. Thanks for your comment.
@carolgk I will do some research into Vonjo - great to hear it is working for you. At present, hydroxyurea seems to be working, but other drugs are probably not far down the path. I appreciate your comment - all the best to you