Platelets low & starting Hydroxycarbamide

[Kari1961]

Morning everyone

I was diagnosed with PV Jak 2 + back in 2015 and have treated with Aspirin and venesection since then. For the past 2 years I've needed venesection every 6 weeks. During the last 6 months they have used to vascular scan team to locate my terrible veins to accomplish the venesection. My veins have now started to give up (they blow the minute the needle is inserted) or they're scarred and access is impossible. So it's looking like I need to be started on hydroxycarbamide within the next 2 weeks.

I'm resigned to that fact but I am worried about the consequences of taking hydroxy. Mostly because all other levels are fine! My platelets for instance are always a constant between 299 & 340 so they're normal. I don't want or need them to be lower.

My question - has anyone experienced taking hydroxy with an already 'normal' platelet count. Did it result in even lower count or possible thrombocytopenia, or did they remain normal.

Kari. x

[Tico]

Hi kari1961, sorry i can't answer you question you asked, i'm etjak2 but i can really understand your concerns about going on hydrea for the first time and considering the level your platelets are at now. This is something you should definitely you have to take up with your haemotologist and ask if their is an alternative to hydrea and tell them your concerns regarding the effects it could have on the platelets dropping too low which you are right in saying could lead to thrombocytopenia,which puts you at more risk of mild to serious bleeding. Sometimes doctors even get the conditions thrombocythemia (too many platelets) and thrombocytopenia(too little platelets). It once happened with me which could have had fatal consequences,so please discuss your concerns with your haemo before starting your treatment regarding hydrea. Atb, tina.🤗

[Kari1961 in reply to Tico]

Thanks Tina. I'm at the Heam clinic today, so I should have the answers later this morning.

[Tico in reply to Kari1961]

Hi kari1961,please let me know how your get on. I'm at my appointment on the 27th. Understand the problem with your terrible veins, it's a case of how many times they 'stab' me with needles before getting my precious blood! Atb,tina.🤗

[Kari1961 in reply to Tico]

Hi Tina

I ended up seeing a consultant I'd never seen before who contradicted everything my usual consultant says. My HCT was .468 he said no to venesection, even though it was over .45. He's moved my appointments from every 6 weeks to every 8 and he said no to hydroxycarbamide for the time being. He said my PRV is 'stable' even though my HCT is over at every appointment and said I'm 'perfectly anaemic'.

This will no doubt change when I see my original consultant at my appointment in April. It's so frustrating when you get contradictory advice.... Kari.

[Tico in reply to Kari1961]

Hi kari1961,believe me i know how you feel! I wonder who i will catch a week tomorrow.what is' perfectly anaemic'. Lol,what tosh! It's like banging your head against a brick wall! DOH. Atb, tinax🤗