Hiya, need some answers/ thoughts please...

[fleetpete]

Hi, diagnosed with PV 2004, on Hydroxycarbamide for 7 years now, platelets 500+ but steady. Recently on 2/3 occasions I've experienced extreme tiredness & been 'off it' for a couple of days. Has anybody else had similar symptoms...with any answers, or thoughts?

Pete

[Swede]

Hi,

Yes, some days I do get very tired and cannot do anything. Like the body doesn't connect with the brain but the day after I can be ok again.(as ok I ever will be).

It can happen once a week or once every forthnight, no pattern at all.

So, yes, it is as it is...got E.T diagnosed 2007-2008.

MLA

[rubyrubyruby]

I have ET and I experience extreme fatigue frequently. Some days I feel so tired I feel sick.

I would say I have more days of feeling knackered than I do of good days now.

[col1]

I was diagnosed about 3 years ago when I started Anagrelide which didnt suit and then Hydroxyurea. Have been on this for a couple of years now. It suits me but my tiredness has no pattern. I can sleep all night go out in the morning to work come home and sleep the whole afternoon. Be well and dont worry - I try not too other than when I experience something I havent before - then go into panic mode until I speak to my wonderful haematologist Prof Claire Harrison at Guys.

[fleetpete]

Thanks everybody for all your kind thoughts and wishes. The (apparently!) now regular bouts of real tiredness are a new thing to me. I'm lucky to have fantastic support from my wife...and a good team at Castle Hill, near Hull. I do know also that I don't suffer half as much as some others but, like so many others, just get frustrated on occasions. So, once again, thanks for your support and kind thoughts...keep strong, all of you.

[Aime]

Hi, I have PV and like ruby some days I feel so tired I feel sick and only thing to do is to go to bed. I can't even stand the tv on! This does tend to tie in with hematocrit levels (most of the time). The fortnight before my last venesection I could hardly put one foot past the other! At that stage I can sleep 10-12 hours a night, sleep in the evening for 2 hours as well and really struggle at work. Brain and body are also not very well connected sometimes!! Take care Aime