HU dose adjustment

[Ridenez]

Jus t started on HU about. A month ago.I amJAK2+ withPV.My question is how long does it take to get the correct dose adjusted? Thanks in advance for your replies.

[friendofpiglet]

I started on HU in January 2015 and my dosage was adjusted up and down until April 2018 since when it's been more or less stable.

I have also had many venesections over time.

I'd get used to the idea that your dosage will be varied for the foreseeable future if I were you.

Andy

[GK40]

I started on HU last nov. Dose has been adjusted every 4 weeks until platelets came down to within 'normal ' range (I say that as different drs have different normals) but they are now being played with until the levels stay stable so it's a waiting game unfortunately. Going up and down is a nightmare.

I was previously on anagrelide and when they had stabked the platelet count after a few months the dosage wasnt changed for years.

Keep at it.

[AirconBob]

I've had Jak+ PV for seven years, Hydroxy and venisection are always reviewed and adjusted on each consultation . I have always been steered towards increasing Hydroxy, but prefer Venisection due to lack o side effects. I am lucky blessed with good veins and rarely have problems. I suspect that the perference towards Hydroxy is economy based, thougth I accept that too many venisections increase Platelet counts.

[Loubprv Volunteer]

Good morning ! I’ve had Pv for 12 years ( I’m 67) and have been on HU for that time as well as fortnightly venesections, Sometimes PV has a bit of a mind of its own and every patient is different.I started off on 500 mgs every two days, and 12 years later am on 1000mgs daily. It works really well but might just take a bit of time to get everything sorted.

Main thing is, don’t worry or fret. You ll be fine. If you’re not already having venesections then you might like to discuss with your haematologist?

I generally have around 4 a year, which seems to keep my HU dosage stable.

HU is a very tried and trusted drug, and is a very very mild chemo don’t forget, otherwise we couldn’t all take it for years!

Best wishes,

Louise

[Wyebird]

I’m afraid we all very different. In my case approx 4 years. My platelets would rise so would my meds. I’ve been pretty stable now for about a year😀.

[nightshadow]

Thanks for asking this question, I was wondering the same thing.

[hunter5582]

That would be an "it depends" answer. Depends on how your body reacts to HU. Standard protocol for initiating HU calls for CBC every two weeks. This allows you and your doc to monitor how you are responding.

[lhammy66]

I think it varies as the condition may take time to stabilise and also progresses randomly. I am now coming up to two years into treatment and still not yet stable. I have just had my first venesection and am moving into the higher levels of HU. I am hoping that I stabilise soon but I know it’s a condition that is unpredictable.