Venesection control

[Joerp]

Hi all

I’m PV Jak2+ . Currently I am on 12 hydroxy a week , aspirin. My platelets have come down slowly from 1600 to around 600 and hopefully will fall further. I originally tried Pegasus with no effect at all.

My question is is there a treatment that will also control heamocrit and negate the need for Venesections. I work away a lot for extended periods of time and fitting venesections in and around trips is proving to be tricky. I recently had to travel to LA on an 11 hour flight knowing I was over my level because I could not get one done in time. I thought hydroxy may control everything but it appears not. I’m not needing them very often (every 6 weeks on average) but they always seem to fall at the worst times and then I can go weeks away knowing I need one.

I have discussed jakafi with my Haemotology team but they are sticking to hydroxy right now as it’s working on platelets. Although I am still not entirely happy on it as I’m 39 and still worry about the long term risks on it.

Any ideas are most welcome.

Cheers all

Joe

[Mazcd Partner MPNVoice]

Hi Joe, I have asked the medical team for you, will post the reply as soon as I hear back. Maz

[Wyebird]

If Maz is on your case don’t worry.

Take care

[Mazcd Partner MPNVoice]

Hi Joe, reply from Prof Harrison at Guy's Hospital is: Perhaps a higher dose of HU may work or having a scheduled or larger volume venesection?

I would be uncertain of JAKAFI just now and we probably wouldn’t be able to get it in this situation.

I hope this helps. Best wishes, Maz

[Joerp]

Thanks Maz

I’ll see how the next few months work out and discuss further.

Cheers for asking.

Jor