Hi All: I am 67 and was diagnosed with MF about... - MPN Voice

MPN Voice

10,437 members14,387 posts

Hi All

colin1947 profile image
3 Replies

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.

Written by
colin1947 profile image
colin1947
To view profiles and participate in discussions please or .
Read more about...
3 Replies
andrewschorr profile image
andrewschorr

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 start...you will soon a see by exercising it will help the fatigue...little by little. I am here to help and so are many others.

colin1947 profile image
colin1947

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.

JediReject profile image
JediReject

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

You may also like...

Hi all!

symptoms!! I have days when I look and feel ok but others when I cannot get out of bed!! Is anyone...

Hi all I'm new here

tired etc. A full blood test was done and the next day the doctor phoned for me to come straight...

No improvement in first month at all.

hydroxycarbamide a day has not lowered my platelet count one bit. From today I have to take 1g per...

Merry Christmas to all!

since my haem has doubled my Hydroxy to 2 x 500mg a day after first going on it 3 weeks ago. To be...

hi I'm totally new to this forum

If anyone knows of anything it would be lovely to hear from you 😊