Changing the time of administering pegasys - MPN Voice

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Changing the time of administering pegasys

Cakeface profile image
20 Replies

I'm due to give myself my 2nd dose today. My CNS advised that it's got to be taken weekly and within an hour of the first dose. My first dose was 15:15.

I note that the general advise on here is to do the injection on an evening. So I'm wondering if it would be ok for me to move my time by a half hour each week so that eventually I'm doing it on an evening? Did anyone else do that?

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Cakeface profile image
Cakeface
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20 Replies
EPguy profile image
EPguy

I'm on Besremi so it's not identical but both are INF medications. My Dr had no trouble with even a 1 day shift, which I did once to re-set the day of the week.

Considering the wide variations in dosings we see here, from 1/week to once per three or more weeks, it would seem quite strict to care about a half hour.

Are you able to ask the CNS what the info source is for this precision?

Cakeface profile image
Cakeface in reply to EPguy

Hi, thanks for your reply. I'll ask her when I next see her because it's not something that's mentioned in the Pegasys leaflet. I ended up doing it around the same time though

Hopetohelp profile image
Hopetohelp

I think your nurse should go and recheck the information they are giving out. Sounds like old twaddle to me. I take mine mid morning but if I have a busy day I take it late afternoon. I can’t see why a weekly dose should be kept within an hour’s schedule. After all if we follow the instructions to take it before bed with paracetamol the nurse would need to see you at bedtime to show you the first injection. 😂

Cakeface profile image
Cakeface in reply to Hopetohelp

😁 that thought did occur to me too

SuET2017 profile image
SuET2017

My experience is, I take mine when it suits me. Generally within a day of my regular day, but I also sometimes miss a week when I’m on holiday. My platelet counts, which are stable on interferon, don’t ‘unstable’ at all. This is all with the approval of my consultant who explained that it’s fine to do this due to the slow release action of the drug.

NCB1983 profile image
NCB1983

I agree with SuET2017 - I take mine at whatever time it fits into my day/evening, and I also occasionally skip a week to avoid having to travel with medication. My platelets have seen a steady reduction and are now stable, so this approach hasn't negatively affected my condition.

Wyebird profile image
Wyebird

It won’t make any difference if you just swap times. I take mine in the afternoon because I found that the side affects kicked in a few hours later. Even now I vary my times. If we go out for a meal early evening I’ll take it when I come home.

I bet any MPN nurse/ medic will cringe reading this lol

Cakeface profile image
Cakeface in reply to Wyebird

😂 I didn't have any side effects this time but I would prefer to take it on an evening rather than it interfering my lunch/shopping trips 😊

Wyebird profile image
Wyebird

Haha, lucky you no side affect in my opinion just change the times to suit you. Good luck

hunter5582 profile image
hunter5582

I have shifted admin time by several hours on a regular basis based on scheduling needs. PEG is a slow release medication that is only taken once per week. In a hospital setting the 1-hour rule would be standard procedure fo any medication. At home with PEG I can't see thst it would matter. Suggest talking to your pharmacist about dosing time changes.

Cakeface profile image
Cakeface in reply to hunter5582

That would make sense because I think she also works on the chemo ward sometimes

Wewo01 profile image
Wewo01

I have changed my by several days and a few hours. I take Peg. You do what is best for you.

Threelions profile image
Threelions

I’ve always taken mine whenever I want (within reason) I aim to keep the doses at as regular intervals as possible but often may switch a day or time to suit.I’ve never been told timing should be that strict so I really wouldn’t worry.👍

EleanorPV profile image
EleanorPV

I’ve done everything above.

Also whatever reduces your stress is best.

Night admission was best for me for the first 5 years. Now morning is best to reduce my insomnia.

Cakeface profile image
Cakeface in reply to EleanorPV

Oh dear, I hope insomnia isn't a regular problem for you. Occasional sleep disturbance is enough for me

Jynx93 profile image
Jynx93

I’m on peg weekly too. I take mine before going to bed so the times vary quite widely. I was told I could take it anytime within 48 hrs of my usual time when I ran out. I wasn’t told you had to take it within a certain time from the previous dose, just the same day

Cakeface profile image
Cakeface in reply to Jynx93

It would appear that I'm the only person who's been told this. 😆 I'll take it at bedtime in future

Jynx93 profile image
Jynx93 in reply to Cakeface

Some people take it at bedtime as it can help you sleep off any side effects if you get them. Good luck

gilded profile image
gilded

Hello! I inject Pegasys at any time of day on the scheduled day. I once forgot ( well, this was because I was partying) and injected the day after with no adverse effect. Nothing has been said to me by the haematologist or nurse about sticking to a strict hourly timetable on scheduled day.

ksos profile image
ksos

I have the same experience as the other people here. I was two days late for a dose once because my pharmacy messed up delivery and my doctor told me not to worry if this happened occasionally. I also inject it whenever it's convenient during the scheduled day.

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