Interferon Alpha

My haemotologist is set to put me on this in mid January. And reading the information sent to me (via MPNvoice) is doesn’t seem that bad I guess once you’re used to injecting yourself.

I wondering if anyone else had been on this treatment and how they’ve got on with it, how regular did you have it, any problems or side effects etc…

Thank you and hope everyone is safe and well…

:slight_smile:

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Hi @Rammie18, at least you now have a treatment plan.
We await hearing from others and their experiences.
Stay safe

Hi Rammie, if it’s pegylated interferon then I’ve been on it. If you comment to let me know then I can tell you a bit about how it was if you want. Katie

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@Erica

I think so… :slight_smile:

Hope you and yours are all safe and well

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@KatieR

Thanks for replying

I’ve just reread the literature sent

And I think peginterferon works in a similar way but is a longer acting form of interferon Alpha

Im not sure I’ll try and find out…

Hope you’re ok Katie :slight_smile:

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No problemo! Okey dokey. I wasn’t on it for very long. But happy to let you know how it was if you want to know. I did find keeping it in the fridge a bit of a pain! And injecting yourself is fine, gets easier each time. Good luck with it!

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Hi @KatieR, a very warm welcome to our forum and you have already found it’s value by helping and supporting each other.
It is a place where you can really say what it is like to be you.
We are all going to be supporting each other through the upcoming holiday season, Covid times and beyond.
If you feel that you would like to talk to someone you can contact the wonderful Support Services Team on 0808 2080 888 (10am-7pm Monday-Friday, and 10am-1pm Saturday and Sunday) or via email at support@bloodcancer.org.uk. Check opening times over the holiday period nearer the time.
Look after yourself and stay safe.

Hi @Rammie18, thanks for asking, yes, I am safe and well and just putting up decorations and overdoing it as usual.

Hi @Rammie18 I have been taking pegylated interferon now for nearly 8 weeks. I started with a half dose and now have full syringe. My platelets were nearly 1400 when they started me on it, they went down first week by about 200 and I felt really unusually rough the first week to the point I had to go to bed. Not like me at all. However after that I haven’t really had any side effects, little more tired than normal, but my platelets did go back up again but are now coming down again slowly but are on a downward trend now, we are at about 1100 now. If you want to know any more about how you feel please message me happy to discuss with you.

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Hi Remy before I was diagnosed with leukaemia I had a years treatment on pegylated interferon and to be fair the only thing seem to be with it was that for a couple of days after I injected into my stomach according to my dear wife I was a miserable git lol and a bit of tiredness I did have B12 injections which helps immensely because I was on it for a year hope all goes well for you and best of luck Bob

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Hi @Bobby, I did laugh at your wife telling you that you were a miserable git.
It sounds as if you have an honest relationship.
Thanks for sharing your experiences as that is really a great benefit of our forum, I think.

Hi Rammie,
I have ET and I have been on interferon for many years 20 to be precise and recently I transitioned to pegasys a slow release legislated interferon.
My overall experience with this medication has been very positive. Sometimes feel a little shivery 8 hours after taking it but I take it at bed time sleep through it if I do so just take 1 paracetamol before my injection and I am all good. You will get used to injecting yourself for sure and it becomes part of you you live with it and not against it.

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Ah thank you so much @Amanda1 . I’d be happy with those side effects as I sleep better cold than warm…

Appreciate your feedback… I’m yet to be prescribed it at the moment but have my next appointments at the end of the month…

Any issues with hair thinning or loss?

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