Hydroxycarbamide

[Dennykev]

My partner has just started on 500mg hydroxycarbamide. He was diagnosed with PV 5 months ago. Is this quick starting on this drug. They have been using vivisection to bring his red blood count down prior to this. This is all so confusing and scary for us. Any advise or help would be very much appreciated x

[jane13]

no it's not early - yr haematologist will hopefully have assessed your partner's overall conditon, age, risk factors etc and taken a view that hydroxy is the best therapy for him. There are several negatives in relying on venesection. lots of us here u will see have been on hydroxy for years without problems.

good luck

[Dennykev in reply to jane13]

Thank you Jane. Your response is really appreciated. I think this site will really help him. I’ve been reading people’s stories and your right it isn’t as scary as we’ve been thinking xx

[Sand-Dancer]

Hi. I have been on hydroxycarbomide for over six years and have only needed one venesection in all that time. It worked well straight away and brought all my blood counts in line - especially the hematocrit which is what the doctor is looking for. Don’t worry too much about the PV either. It isn’t as scary as you think. Lesley x

[piggie50]

Hi,

Everyone is assessed individually for starting Hydroxy. You don’t say what age your partner is, this is one consideration along with risk of thrombosis and other things. I have been on Hydroxy for over five years and usually have a venesection about once per year when my Haematocrit rises above .45.

If you haven’t already please look at the website mpnvoice.org.uk it may help you put things in perspective and feel less scared.

Best wishes

Judy

[Dennykev in reply to piggie50]

Thanks Judy. He is 52. Any help advice and reassurances I can give him would be really appreciated. Thank you so much. X

[Tico]

Hi Dennykev,try not to worry too much about your partner having to take the hydrea. I have etjak2 & was put on it straight away. Like people have said it goes on a lot of factors before being prescribed it. I was only 38yrs old at the time but had other high risk factors,previous tia.within months the horrendous symptoms that had virtually crippled me,both physically & mentally had started to ease & make life bearable again. A lot of us here still struggle from time to time with fatigue & bone pain amonst other symptoms but it was right for me even though i was terrified to take it in the begining. Any concerns your partner as,tell him to talk to his haemo or clinical nurse specialist at his next appointment. Atb,tina.😊

[Dennykev in reply to Tico]

Thank you so much for taking the time to reply. Just knowing there are people there to talk to is a blessing x