Pegasys: Hi all. I have been on Interferon alpha... - MPN Voice

MPN Voice

10,874 members15,189 posts

Pegasys

teddy21 profile image
14 Replies

Hi all. I have been on Interferon alpha injections (anything between 2 and 5 days a week) for the last 8 years. I am going to be changed to pegasys ( supply issue with the interferon).

How has everyone else found pegasys? I do get flu like symptoms with interferon but as I take it at night it’s fairly tolerable. I’m starting a new job so the timing is rubbish but I guess I won’t know how I’m going to get on with until I start taking it.

Lxx

Written by
teddy21 profile image
teddy21
To view profiles and participate in discussions please or .
Read more about...
14 Replies
JohnSC profile image
JohnSC

Hi,

I have been on a weekly 90mg dose of Pegasys for a couple of months and I have found it no problem. I don’t have any side effects and my blood tests have been positive.

My understanding is that Pegasys as a cleaner more long acting version of interferon. So if you have been OK on it up to now you should hopefully find Pegasys an improvement as you only inject weekly.

John

teddy21 profile image
teddy21 in reply toJohnSC

Thanks so much. Good to know. I’m much happier to be injecting just once a week so fingers crossed it works out ok.

JackLina profile image
JackLina

Hi. i have been administering Pegasys weekly (45mcg) since June because I could not tolerate hydroxycarbamide. Deadly!!!!! Although I have many side effects such as severe joint and muscle pain, sleeplessness, night sweats and brain fog, they are tolerable since I became used to accepting this as 'normal'.

The change in my platelet level has been positive and within 3 weeks i was within normal range. Last test i was 299, so I'm content to suffer the pains etc.

I would say go for it if you're getting the opportunity. As you see here, some users don't even suffer side effects.

All the best.Penelope

teddy21 profile image
teddy21 in reply toJackLina

Thank you. I know what you been. My normal with interferon is waking up feeling like I’ve been dragged through a hedge backwards so hopeful I’ll be able to tolerate it ok.

Poppy112 profile image
Poppy112

I have been on pegasys for 4 months now 45 weekly. Prior to this I was on the standard interferon for 5mths but had to come off this due to horrible side effects. Since being on pegasys I have no further side effects and interferon has normalised all my blood counts, wonder drug for me. Good luck and hope you get on in with it.

EleanorPV profile image
EleanorPV

I’ve been on Pegasys since dec 16. No noticeable side effects.

teddy21 profile image
teddy21

Thanks everyone. I really appreciate your feedback and definitely not as worried now :)

conno61 profile image
conno61

Cant help you sorry, I'd love to get peg interferon but it's a postcode lottery in the UK as to whether you can get it.

JackLina profile image
JackLina in reply toconno61

Maybe you could see a consultant in an area that will!!!!! When I went to Liverpool already taking Pegasys, I was told by Dr Butt that he could not prescribe it except in extreme circumstances when all else had failed.

conno61 profile image
conno61 in reply toJackLina

Yes dr.butt told me the same, but you can get it in Cheshire, it's insane.

JackLina profile image
JackLina in reply toconno61

It's all about cost isn't it? It's disgusting. The money they must be wasting giving everyone hydroxy and causing early retirements due to side effects.

piggie50 profile image
piggie50 in reply toJackLina

Pleased to say I have no side effects from Hydroxy?

JackLina profile image
JackLina in reply topiggie50

You are an amazing person. I have a bad reaction from just about everything. Can't even take paracetamol regularly or I break out in a rash and get feverish!!!!

Bobadog profile image
Bobadog in reply toJackLina

Absolutely,it’s completely false economy using the wrong medication.

Not what you're looking for?

You may also like...

Change from Interferon to Pegasys

At last my trust has approved the change from basic Interferon to Pegasys. I have only been allowed...
swimswam profile image

Pegasys starting dose for PMF

Hello everyone! I have primary myelofibrosis since February 2021 Doctor put me on Hydroxyurea...
Goldie41 profile image

Pegasys side effects

Hi all Started on Pegasys 11 weeks ago, at lowest dose of 45mg, suffered terribly with side...

Pegasys blood results

Had my first results after two months at 45 mcg weekly, increased to 60 mcg last couple of weeks...
Paul123456 profile image

Persistent cold symptoms with Pegasys?

One great side effect of being on Pegasys for the last 3 years is that I’ve had hardly any colds,...
AndyT profile image

Moderation team

Debinha profile image
DebinhaAdministrator
Mazcd profile image
MazcdPartner

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.