Essential thrombocythemia

[fluffy2015]

Enyone in Wiltshire got essential thrombocythemia jak2positive over 60 I have been on hydroxycabamide for 3 years now lots of infection platlets are 510

[Phelpsy]

Hi Fluffy I'm same as you regarding your diagnosis , I'm on HU ,clopadogrel & statins ,after a Tia nearly 2 years ago ,

my playlets are 430 from 800+

I live in Newcastle shame I'm a few 100 miles away ,,From Pam x

[fluffy2015 in reply to Phelpsy]

Hi Pam I take 500mg a day hydroxycabamide a day I'm worried about whatit doing to me and side effects long turm I have pleurisy now also had it in February what do you think about long turn effects

[Phelpsy in reply to fluffy2015]

Hi Fluffy , I'm sorry to hear your poorly , is this due to low blood counts , ?

I take 500mg 4 days & 1000mg 3 days ,I must admit I also worried about the drug HU

But I've spoken to people who have been on it for 10 yrs & also a higher dose , so it ease my mind , I get tired easily I've noticed , but I'd rather have that than another Tia or clot,

I'm very greatful for this medication , so far do good , try not to worry to much , I know easier said than done ,

I was very apprehensive but didn't have a choice as my platelets were 800+ ,

What about your platelets ?

[fluffy2015 in reply to Phelpsy]

Hi Pam

Yes this is due to low blood count. My platelets were 510 at my last appointment but will probably be much higher next time due to the infections.

I worry about increasing my dosage because it makes my immune system low and I seem to keep getting infections one on top of the other but my haematologist wants me to increase it.

[Mazcd Partner MPNVoice]

Hi Fluffy2015, you should discuss the amount of infections you are getting with your haematologist. If you would like to have a buddy to talk to then please email me at [e-mail]. Best wishes, Maz.

[fluffy2015 in reply to Mazcd]

Hi Maz

Thanks for the advice I will discuss it with them and be back in touch with you should I decide I would like a buddy to talk to.

[SpiritAsh]

Hope you are feeling better.I have ET and I am 66. Diagnosed 1 Yr ago Had symptoms for 2 years prior to that. On Hydroxycarbamide and aspirin. Not had too many infections.

[Hidden]

Hi Fluffy I too have ET/PV Jak2 + and take Hydroxy 1000mg x 7days a week, platelets remain at 529 on this dose. I am 56 and have been taking it for 4 years. I too get numerous infections on a regular basis and when they kick in, I either reduce or stop the hydroxy for a week to give my white cells a chance to recover. Its not ideal I know - but not much choice really. I can really empathise with you on the infections its horrid, but I don't worry too much about the long term effects of the hydroxy as there are lots of people on this forum who have been taking it for years and are doing fine, which gives me confidence. Best Wishes Indy