Medication review

[Mackydee123]

Hi all

I’m 39 and diagnosed with ET a year ago. My platelets are currently 1072 and I’m on aspirin 75mg daily.

I have a very busy 2 years coming up (career related) and need to be at the top of my game, unfortunately I get hit big time with brain and body fatigue, which is not helping. I asked my haem about reducing my numbers and he was of the opinion that unless I hit 1.5 he was not considering a change in treatment. He did refer me to an MPN specialist who I am seeing tomorrow. As far as I know she also heads up the clinical trials unit so I’m hoping we can have a discussion about taking a more proactive approach.

I won’t get far in my career if I continue with this brain fog, forgetfulness (I have literally no instant recall) afternoon sleepiness and asleep on the sofa at 8pm!!

Anyone else suffer the fatigue when your platelet numbers go up ? And if so what do you do to combat it?

I know it’s not the norm for someone like me who is labelled as ‘low risk’ due to my age and platelet count, but has anyone else managed to get on a medication to reduce their numbers and increase their quality of life?

Thanks

Kerry was

[Annushkah]

Platelets were 1.5. Taking Hydroxyurea ad now 559 but fatigue still there. Hoping that if lower platelets to normal fatigue will vanish but I have to say I think of it like being raped!! You just have to lay down for it. Got caught in the sugar cure, gained 20 lbs. Trying low dose amphetamine but hard getting a script and it’s hard on me. Gosh...so sorry but I cannot get hardly any game and forget the on top part.