Roferon-A question

[Jo_L]

I have been using Roferon-A since early 2013, injecting 3miu 7 times a week for most of that time.

It's currently not doing a fantastic job of controlling my blood counts and I was wondering whether any of you have been on a higher dose than this?

Thanks,

Jo

[zvinkovic]

Hi Jo,

I am on Roferon also, taking 3 miu 6 times a week for the last 5 years, it was 3 miu 3 times a week before that, my platelets are around 600-650. All other counts are perfect, except some liver enzimes, but I believe that is normal considering medications. As I understand, here in Croatia if this dose stops being effective then I will be considered tollerant to interferon and will have to switch to anagrelide. I don't know the situation in your country, but I think I remember that Robert Tollen, listowner of mpd-support mailing list, was taking 6 miu every day for his PV and he was a strong advocate of interferon use. Unfortunately, Robert passed away 3 weeks ago so I don't know of other people being on such high dose.

What are your numbers? Could you maybe ask for pegylated form, maybe it would control your counts better?

All the best

Zlata

[eastwood1932]

Hello Jo

I am also on Roferon and have been for a couple of years. I am not sure if the dosage will go much higher for ET but I know it is used in higher doses for other illnesses. Did you go one Roferon straight after diagnosis or were you on HU first? My bloods are not as stable on Roferon as they were on HU but so far they have stayed below what my heam considers to be a dangerous level but we have agreed that if needed the next step would be to continue with the Roferon but to add in low dose HU. Maybe that might suit in your case

Good luck

janet