MPN Voice
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Hi All

I am 67 and was diagnosed with MF about 2 years ago. Being 'treated' with Ruxolitinib at 15mg twice daily. I suffer from low platelet counts but my other bloods are reasonably okay and stable. Some days I am very fatigued but other days feel reasonably okay. Sometimes itchy sometimes not. I sleep quite well usually going to bed at around 11 but never get up before 8am. I am unfit and would like to hear what exercise works for other sufferers.

3 Replies

Hi Colin! I am 64 take ruxo 15mg in am and 10 mg at night 2 years feel good platelets had been lower but back high now. Feel strong, thank God. Do whatever I feel up to. walking for sure, swimming, sometimes even mtn biking. I guess I am lucky. Walking is a great will soon a see by exercising it will help the fatigue...little by little. I am here to help and so are many others.


Hi Andrew,

Thanks for your reply. I do try to walk most days when I have the energy - once I get going it's okay! I have an old bike in the shed so will see if it's roadworthy and give that a go. Most days I feel good but now and again I get two or three days of exhaustion when I just have to slob around. Taking it day by day. I am starting to keep a daily diary as I tend to forget how I felt and when, so I can discuss these things with the haematologist every month.


Hi Colin - Im 53 have MF and on Rux - in 4th month at same as you but I felt much better on Hydroxycarbamide as I have become very fatigued and have sore feet for some reason which makes walking a chore. My platlets are down and I notice I bruise more easily. My spleen seems largely the same ie very large and uncomfortable. On the plus side my itching is much better and my appetite very good. Im still optimistic that Rux will help me longer term. Take care mate. JR


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