Hydroxy dosage

[RosemaryHarper]

Hi all - I hope everyone is feeling as well as they can - At least Spring is here to help!

I have PV and my platelet count started at 980, went down to 680 and is now about 490. I seem to be on a very high dose of Hydroxy - 1000mg one day and 1500mg the following - I wondered if anyone else is on this doseage and how it affects you? I cannot get an appointment with my haematologist until 6 June (although he said he wanted to see me mid May) and I'm finding it quite hard to cope.

Any thoughts?

Rosemary

[mhos61]

Hi Rosemary, maybe they'll start to reduce the dose soon. It's probably a matter of getting the counts down quickly and then titrating the dose accordingly?

I was initially put on one hydroxy tablet a day until my platelets came down to 288 and then they reduced my dose by allowing me to have weekends free, so Monday to Friday only for me...for now anyway!

Mary x

[RosemaryHarper in reply to mhos61]

Weekends free sounds wonderful! I'm sure I feel worse the day after I have had 3 tablets although I'm not sure if it is psychological??? Rosemary

[Inca]

I have had exactly the same dose as you of Hydroxy for 18months......at first going up from 2 comprimes per day to 3 2 3 etc,was noticeable,much more tired,seem to have got used to it now. My H C T is refusing to budge from 51,so consultant cannot reduce the dose,nor does he want to increase it as my Plaquetaire is low.Monthly test tomorrow,so hoping H C T has dropped at last,don't hold out any hope tho. Hang in there Rosemary,your body will adjust to things,you will feel better.My consultant of 7 yrs said not to worry , laughing he said ,I will live until 80!!!! That gives me 3 yrs !!!!!Great!!!Keep strong,rest if needed,drink masses of water,enjoy all you can! Very Best to you ,Sally

[RosemaryHarper in reply to Inca]

Thank you so much - it is a real comfort to talk to people on this site. Rosemary

[jane13]

Hi i was on a similar dose for a while. Hopefully your counts will come down and you can reduce the HU. How r u finding it hard to cope specifically?

[RosemaryHarper in reply to jane13]

Mouth ulcers and feeling as if I have flu all the time. I have to spend several days a week in bed - did you find this? When I mention it to the haematologist he always says he thinks I have a viral infection.

[jane13 in reply to RosemaryHarper]

I had the mouth ulcers(try Corsodyl mouth wash) and generally felt unwell/rundown but not as bad as you. I suspect lots of haems think that if r blood counts r ok then so r we - which is often not true - but u could try you GP in case something else going on in parallel?