Hi all my name is Peter, I live in Western Australia and I was diagnosed with ET in 2010. I questioned the diagnosis when it did not appear to follow the WHO guidelines and the top bloke agreed with me and I was then diagnosed with MF. I am now 77 years of age.
To help the newbies to perk up, life has been quite good in the last 7 years and although I feel desperately tired at times life is still good.
I used to gave very bad Pruritus in the beginning and tried Interferon injections for a time, no relief gained so I tried UHV radiation three times a week and that helped the maddening pruritus. I still got the bone aches. About three years ago I was lucky enough to get the drug company to give me Jakavi (Ruxolitinib) on compassionate grounds. and WOW what a difference, No bone aches, no pruritus, and my spleen is normal sized again.
I have been transfusion dependant for a few years, but recently my Hg has remained in the mid 80s and I am stable. My doctors are nonplussed, they have not got a clue as to what might be happening. The ONLY drug I take is the Jakafi. My platelets are in the normal range, my white cells are three times higher than normal, and the rest of my results look as if they have been written in blood, very little in the way of black type.
However the big negative for me is since I no longer need transfusion each month I have been desperately tired, dizzy, depressed and sometimes a cranky pain to my darling wife Lori.
Well that is all about me. Every day is Christmas, but I do wish someone could come up with an anti tiredness anti cranky plan.
Hope all of you sharing this affliction can see light at the end of the tunnel.
Best Wishes Peter