I have been on Pegasys 45mcg weekly since October last year when I was diagnosed with Polycythaemia vera ('PV') following a bone marrow biopsy. I am doing well. Due to supply issues my consultant changed my dosage to 90mcg fortnightly. The side effects are awful. The first dose made me forgetful and slightly nauseated. I left half my belongings in my, luckily shared, hotel room. The second dose has worsened the effects. I have had 3 days of flu like illness and the nausea, although slight, persists. I have become forgetful, forgetting to give my little dog her epilepsy meds, insisting that I had hung washing out when my husband offered to do it. I hadn’t hung washing out but I was absolutely convinced I had. He is concerned as am I.
After only 2 doses at 90mcg am I ok to give up so early and ask to go back to 45mcg weekly. It is such a waste to discard half a syringe full. I know the pharmacy have had supply issues.
I am 71 years old..
Thank you
Thank you..
4 Likes
Hi @FrannyBee, nice to hear from you. Though I’m sorry it’s because of these side effects.
On the supply point - we published an update about Pegasys availability last year that might be reassuring: Interferon for MPNs – Pegasys available from July.
I’m going to bring our nurses in here, as they’re much better placed than I am to comment on both the treatment and the side effects you’re experiencing: @BloodCancerUK_Nurses.
I will say that some side effects with interferon are known to affect people differently, and our PV treatment page and side effects page have more information that might be useful. But the memory and confusion you mention - particularly being absolutely certain you’d done something you hadn’t - is something I’d encourage you to flag to your consultant or clinical nurse specialist sooner rather than later. That’s worth them knowing about beyond just the question of adjusting your dose.
I would think it’s completely reasonable to go back to your consultant and ask whether returning to 45mcg weekly is an option, given what you’re experiencing. That’s exactly the kind of conversation they need to have with you - they’ll be able to weigh up the supply situation, the side effects, and what’s right for you specifically.
And if you’d like to talk anything through in the meantime, our free Support Line is there - 0808 2080 888 (option 1) or email support@bloodcancer.org.uk. Please do give us a call if it would help to talk things through.
Take care,
Ceri - Blood Cancer UK Support Services
4 Likes
Dear @FrannyBee ,
Sorry to hear how awful you have been feeling since your Pegasys dose was increased. This sounds really horrible and it is understandable you are concerned.
It is important to let your team know how you have been feeling since the dose increase so they can assess and discuss this with you. Sometimes medication waste is unavoidable. The most important thing is receiving the treatment dose which works best for you.
Do let us know how you get on
Kind regards
Fiona (support services nurse)
6 Likes
@FrannyBee
Thank you for posting
I too have Polycythaemia vera ('PV') and was on interferon and was one 45mg and had to throw away half the dosage but it is what it is.. didn’t sit right though especially as you say there is a shortage. Sorry to hear you suffering from the side effects. I struggled with the first couple of injections but if it’s any comfort they all but disappeared as time went on.
my specialist and nurse mentioned sometimes it’s the timing and you’ve done before and after that can sometimes cause side effects or alleviate them. After or before eating, taking in first thing, after breakfast before of after lunch/dinner or before bed?! Just a case of tinkering and keeping a diary which maybe worth taking to your next specialist appointment.
Hope it improves and keep us posted.
4 Likes
Hi Ceri,
Thank you so much. Your reply is very reassuring and mirrors what I thought would be the best course of action for me.
I will contact Haematology tomorrow.
With best wishes,
Frances 
4 Likes
Hello there @FrannyBee, welcome to the forum. I’m really sorry to read of your diagnosis with Polycythaemia vera ('PV'). It sounds like you’ve been doing well until recently with treatment which is great.
I see you’ve had lovely supportive responses already and many links to great information about Polycythaemia vera ('PV'), as I did when I was also diagnosed with Polycythaemia vera ('PV') back in 2023. My treatment has been slightly different to yours as I take daily hydroxyurea and aspirin, but I also experienced pretty severe side effects after starting. Brain fog, horrible fatigue, and I’m sure I forgot a lot. Up in my thoughts I imagine!
I’d agree with others by saying it’s always best to let your specialists know of any new or changing side effects to the Polycythaemia vera ('PV') or its treatment. Mine encouraged me to stick out the initial transition while my body got used to the medicine even though it felt horrible. For me it did pass after about 3 months.
Perhaps I read it wrong but, if you haven’t already, try not to give up taking the Pegasys unless your specialists say what dosage to change to, including back to 90mcg, or even a change to a different medicine. I think we’re fortunate with Polycythaemia vera ('PV') to have many options if one doesn’t agree with us or stops working so well.
Something that can be a comfort when I’m feeling like my memory is rubbish is reminding myself that of course it will be when facing something like Polycythaemia vera ('PV')! I think it can take up a lot of headspace and distract us from being totally present. Even 3 years on I can find myself distracted to the point of daydreaming about all this. Not that I’m saying forgetfulness is something to be minimised, definitely mention it to your consultant.
Anyway, all the best Frances, I hope your haematology appointment goes really well tomorrow. Perhaps have a list of queries and notes ready, I find that helps me during my own appointments. Ask your doctor to repeat any points that don’t make sense as there is a lot of medical jargon.
Do please keep us posted about how you get on @FrannyBee.
3 Likes
I woke up hot with a temperature of 38.4c.
I have contacted Haematology and am now waiting for a call back from one of the Doctors.
Frances​
2 Likes
Fingers crossed that you get the support you need @FrannyBee
High temperature always a worry for all of us living with blood cancer
1 Like
Hi DuncanB,
Thank you for your support, which is greatly appreciated..
No, I definitely do not want to give up with Pegasys because I am doing well. I was happy on 45mcg a week but my consultant knew I wasn’t so keen on discarding 1/2 a syringe a week. We had been discussing putting my dose up, but at the last appointment I was prescribed 90mcg every 2 weeks, which I was pleased about. I had no side effects on 45mcg. The first dose was OK. I drove down to the New Forest for a weekend with friends. It was my first long drive since I was diagnosed so I attributed my tiredness to that. On reflection I can now see that I was a bit “zoned out” plus on departure I left my pillow and jewellery on the bed and didn’t even notice.Im usually meticulous about my pre departure room check. Luckily my friend brought them down for me…last Thursdays dose was fine until Friday, when I was in a complete brain fog, which lasted until yesterday. It was extremely unpleasant. My husband was concerned. I have called Haematology and am still waiting for a call back. My temperature went back to normal with one dose of Paracetamol and hasn’t risen again. Yes, the temperature did concern me.
I’m hoping to return to my weekly dose of 45mcg.
2 Likes
They never called me. I shall try again tomorrow. This time I shall go though the Haematology medical secretaries because they’ve always been so helpful in the past.
I’m still spiking a temperature.
2 Likes
Hello again @FrannyBee, I’m really sorry to read of you spiking a temperature.
I live with Polycythaemia vera ('PV') like you and, not to alarm you, my haematologist tells me to always check with doctors as soon as I can if I get a fever as it can be more serious with Polycythaemia vera ('PV').
I’d really suggest you call NHS 111 just to be sure and talk it over with a specialist: https://111.nhs.uk
Make sure to tell them about your Polycythaemia vera ('PV'), that fever, and that your Pegasys treatment has changed recently. Maybe have your haematologist’s info handy too.
Do please let us know what they say @FrannyBee, thinking of you.
Well. I phoned through to the Haematology Specialist Unit this morning and spoke to one of the nurse specialists who said I needed to talk to a doctor. After that, nothing.
I used to work as a nurse at the now defunct NHS Direct so I am familiar with the triage algorithms. I’m not ready or poorly enough to spend a long night in A&E at Croydon University Hospital that’s for sure.
2 Likes
I understand @FrannyBee, I’m not sure I’d want to spend the night there either!
I won’t patronise you further as a skilled nurse, but please know I am concerned about that fever so do please check it over tomorrow or sooner if you start to feel more poorly.
1 Like
Ah you’re not patronising me at all! I’m long retired and Haematology was never ever a strong subject for me. So much has changed in terminology and the way blood test results are given!
I must say I was surprised not to get a call back today though. I promise to be more relentless in my pursuit tomorrow.
2 Likes
Update. First of all thank you so much for your support. It has been more valuable than you may imagine. This morning I wrote down the events of the weekend, called the haematology medical secretaries, who have always been very knowledgeable and helpful, asked if they would forward the email for me. Yes of course they would. The email has gone straight to my consultant. She is off site today, but I’m much better, no temperature, so that is fine.
I’m hoping that she will agree to my request to return to 45mcg weekly. I’m sure there won’t be a problem. It is disappointing but the escalation in side effect between the first and second doses at 90mcg is worrying.
3 Likes
Aww you’re honestly very welcome @FrannyBee, I’m really pleased to have been supportive.
I’m especially pleased that your temperature has dropped, one less thing to worry about! It’s excellent that you were able to get through to the haematology secretary and pass on your notes. I did similar yesterday, funnily enough, in preparation for seeing my own haematologist as he likes to know how I’m getting on in advance. Maybe yours does too.
Keep us posted please @FrannyBee about how you get on, and I’ll keep an eye out for your posts.
Please don’t hesitate either to ask anything that comes up for you, and remember the lovely Blood Cancer UK nurses are just at the end of the phone if you’d like to talk anything through with them on 0808 2080 888.
2 Likes
