Hello all, I have been self administering peg interferon alpha for Polycythaemia vera ('PV') for about 8 weeks now. I am on a half dose for now with a view to increasing to full soon.
Just wondered how others are coping with the actual injection? I currently do it in the left side of my belly, I can’t do the right as I recently had a partial kidney nephractomy as I had a tumour and I find it still sore.
Each time I do the injections it feels slightly different. I am slim of build and so its not easy to grab some flesh in which to put the needle in and its a bit sore sometimes. I get quite anxious when Thursday comes around but I spose its something I’ll get used to. Just wondered how others feel?
Hello there @Lizzi, welcome back and I’m sorry to read of your diagnosis with Polycythaemia vera ('PV'). I was diagnosed with Polycythaemia vera ('PV') as well, back in 2023, although I take hydroxyurea instead, in capsule form. I’m sorry too to read of that recent operation, hopefully you’re recovering well.
You know, there’s a lovely thread of forum members many of whom take peg-interferon and live with Essential Thrombocythaemia ('ET') which I’m sure you know is closely related to Polycythaemia vera ('PV'). They’re a friendly bunch and I bet you’ll get some helpful information from their experiences of self-administering: ET diagnosis finally sinking in
Would it help to speak with the Blood Cancer UK nurses? They can answer medical queries and point you towards other useful resources and their number is 0808 2080 888.
Don’t forget you can use the search box at the top to look for specific topics like “peg interferon” and the like. Hope that helps a little @Lizzi, do please keep us posted.
Thank you for your post. We’re sorry to hear about your diagnosis of Polycythaemia vera ('PV') and to hear that you’re having a difficult time with the injections. It’s completely understandable to feel anxious about them, especially when you’re finding the site sore and have had recent surgery.
You may find it helpful to have a look at the patient information leaflet for your peginterferon alfa, as sometimes there are different injection sites listed that can be used. However, because you’ve mentioned soreness and due to your recent partial nephrectomy, it would be best to speak with your haematology team or CNS about this. They can advise whether there are alternative injection sites that would be suitable for you and make sure that the technique is comfortable for you.
It’s also worth letting them know that the injections are causing you anxiety each week. They may have practical suggestions to help reduce discomfort and in turn this anxiety, or be able to review whether any changes could make the process easier for you.
I can imagine this isn’t very pleasant, especially when you’re recovering from surgery. Hopefully some other members who are using this medicaiton will be able to share their experiences and tips.
Like you, I have Polycythaemia vera ('PV') and used to have to inject Interferon alpha. It didn’t cause me any anxiety.
Being skinny (rather than slim) it was difficult to find enough fat to inject into. I had been told at the hospital I could also inject into my thigh instead but there was even less fat there! I used to inject into my belly fat alternating left and right but also varying the exact spot. I don’t know if this is any help or not. Just my own experiences.
Thanks for your reply. I have injected myself in my thigh once but find that a bit painful, again not a lot of fat! anyway, again, thanks. I think it will all get easier as time goes on x Helpful to hear other points of view.
anyway, again, thanks. I think it will all get easier as time goes on x Helpful to hear other points of view.