Hello DaddiesGirlyD; welcome to the forum.  I do not have any personal experience or knowledge of myelofibrosis but came across a website which covers this - I attach a link.  I hope this helps a bit.  Annie

http://www.mpnvoice.org.uk/

Thanks that was interesting to read but really I want to hear from anyone who has experienced this disease themselves personally, it is a rare condition so maybe there are not many on this site who have heard of it or experienced it. Thanks for your reply all the same.

I was diagnosed 2years ago I am well looked after my medication is ruxolitinib a chemo tablet it has a few side affects but there is always a tablet for them you have good days and bad days I just get very tied and chest infection hope this helps and good luck

Hello DaddiesGirlyD. 

My father who’s in his early 60’s was also just recently diagnosed. How is your Dad getting on?

Hi Pual.

My dad is still waiting for his test results to come back before he starts any treatmeant. He has to wait another 3 weeks before the results come back, 

He is always tired, very weak, can’t breathe properly and he’s sleeping a lot. 

Did you also feel this way? Does the Ruxolitinib help?