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…
Hi @Rammie18, at least you now have a treatment plan.
We await hearing from others and their experiences.
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
I think so…
Hope you and yours are all safe and well
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
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!
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 email@example.com. 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.
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
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.
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.
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?
Hi Erica sorry it’s been so long that have been on here as I said my wife and I fell in love at first sight got married very quickly and had 4546 years of the most beautiful relationship a couple can have but rather than tell me I was a miserable git she waited till I felt that and when I said to her why didn’t you tell me that was horrible she just sent me said because I love you Bobby truly I was blessed
Oh @Bobby thanks so much for your reply, you were truly blessed and brought a tear to my eye.
How are you doing now?
Hi Erica sorry I’ve been offline for a while just used well basically to missing fairy princess and not feeling too clever just to say I’m back online now and I hope you’re all well all the best Bobby xx
Hi @Bobby we’ve missed you and good to have you back.
I bet you are missing your Fairy Princess.
You say that you are not feeling too clever what has that been like for you.
Don’t forget we are here for you and if you would like to talk to the Blood Cancer UK support line so are they.
Look after yourself.
HI Rammie 18, I have just spent the day in London visiting the lovely Dr Joel Newman, blood cancer specialist. I have been advised by him that I should go on Pegasys and am due to start in March…
He was so easy to talk to and used no jargon whatsoever. Up to now I have been fighting shy of treatment because of possible side effects, so I would be interested in how you get on - but we’re all different and have different reactions, so please accept my good wishes that you are side effect free!
Hope you’re well…
I’ve been on Pegasus interferon Alpha since since June 2021 on both fortnightly and now weekly and apart from my first dose (which was double dosed) I had a mild cold and high temp that night which waking up the next morning I was fine. I was nervous and anxious injecting myself but the needle isn’t that bag I grab a bit of body meat from my abdomen and take it as slow and gentle as I need too. I’ve never felt any side effects since I’ve been taking it but I was really nervous when it comes to taking a cancer treatment. Like you said everyone is different. I sometimes have to have a venesection still but these have become very scarce like once a year since being on interferon. I’m currently still on the smaller dose of 45mcg. I feel like it’s definitely controlling and stabilising my levels but then again I don’t really no any better.
Definitely keep us posted on how you get on and ask away if you have any questions or concerns
I watched a video on Polycythaemia vera (PV) on YouTube which stated that interferon if tolerated is a more positive medication that the likes of hydroxyurea. I think it was this one
When I said I don’t have any side effects… I do get itchy… a lot at times but I believe the lack of iron contributes to this more. But I take antihistamines in the morning and at night and it seems to ease and become management