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

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Pegasys

teddy21
teddy21

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

13 Replies
oldestnewest

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
teddy21
in reply to JohnSC

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

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
teddy21
in reply to JackLina

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.

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.

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

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

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
JackLina
in reply to conno61

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
conno61
in reply to JackLina

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

JackLina
JackLina
in reply to conno61

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
piggie50
in reply to JackLina

Pleased to say I have no side effects from Hydroxy?

JackLina
JackLina
in reply to piggie50

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!!!!

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