I started taking peginterferon 45 mg in November 2023 with a platelet count of 860. Since then, my bloods have been checked monthly, and my dose gradually increased. On Monday I will start 180 mg, alternating the dose weekly with 135 mg for a month, as my platelet count is now 665 and my Haematologist was hoping it would be lower.
I was wondering what others have experienced. I understand we are all different. Most reports I have read say peginterferon takes time and is a marathon, not a sprint. I would love to know of your experiences, please share.
I was interferon for two years and it controlled my levels well though needed a venesection there and then.
As you said it’s the slowest of the treatments available and though I stayed on weekly doses of 45 I didn’t endure many if any of the side effects. Eventually my platelets dropped at stablised at around 300.
It is known that changes in dosages is quite common as there is no optimum level you should be on or aiming for as like you said everyone is different. So don’t be disheartened by changes in thinking things are getting worse or not working, it’s just a case of tweaking things to get the best and most effective settings for you.
It’s great you’re getting checked and monitored regularly as it’s shows they are on top of it.
My thoughts are, although my platelets are only dropping a little, one month only by 1, they are heading in the right direction. In almost 6 months, they are down by 200 to 660. Still a way to go. I thought it would help with my next consultant discussion.
I am so grateful to everyone for sharing. This is a fabulous forum. Thank you Erica for always being there for all of us xx
