Recent appointment

[PT99]

Hi guys

I had an appointment with my consultant yesterday - first time in a year although my bloods have been regular checked. I’m 54 and have PV.

I’ve been on Pegasys for five and half years and my bloods have been largely stable apart from a dip in HGB to 116 which has now recovered to 123 in the last two weeks. Platelets hover around 300. Five months ago he reduced pegasys from 90mcgs once a week, to every 2 weeks .

He now thinks I am heading towards ‘remission’ but what exactly does that mean? He also said that once platelets hit 200 he’d take me off Pegasys and monitor the situation but I do find that prospect a little scary as my quality of life greatly improved after I went on it.

Would be good to hear others experience in similar circumstances.

Many thanks in advance.

Pete

[saltmarsh]

Pete. I can't contribute anything to your post as I'm still on HU. Just wanted to say how happy I am for you and the success you're having with Pegasys. Congrats

[PT99 in reply to saltmarsh]

Thanks saltmarsh

[mhos61]

That’s really great news Pete.

I would be guided by your Specialist. I’m sure you will be closely monitored and if your counts show any significant increase you can always restart the Pegasys. To me, it’s a win win!

I suppose it’s hard to gage what ‘remission’ may mean in the long term without interferon until you try it. You maybe one of the lucky ones who holds that ‘remission’.

Good luck

[ainslie]

some experts believe it’s better to stay on a small dose, some are even on 22.5mg per month

[Anag]

remission is a WONDERFUL thing! It means that the illness is taking a “break”. This can be for a long period of time or less. It means just that, no more meds for a while. I’m very happy for you! Yay!

Anag

[Hopetohelp]

it’s all sounding very good and positive. Well done! There are lower doses you could try first before stopping. 65 and 45 and 22.5 to reduce slowly so not such a shock to the body. Might be worth asking your haematologist. Let us know how you get on

[PT99]

Thanks for your responses everyone.

When the time comes I think I’d want to continue on a low ‘maintenance’ dose but will see what happens.

Best wishes to all.

Pete