Interferon v Peginteferon

[Paul123456]

If one chooses to go this route, which drug is most likely to be prescribed in the UK. I assume INF weekly doses but possibly greater side effects? Peg can be taken every two weeks and meant to better tolerated?

Thanks

[EleanorPV]

I take peginterferon (pegasys). This is a once a week injection. I’m in Scotland. It’s difficult to have it prescribed. Minimal side effects. Ropeginterferon is injected once every 2 weeks. This isn’t available, in the uk. Might be soon.

[Poppy112]

I take Alpha Interferon Roferon, I inject 3 times a week. I did ask about Peginteferon and was told I would only be prescribed this if Roferon wasn't tolerated in my trust. I have been on this for 5wks now and am due my blood levels checking on Friday so we will see if it is effective.

[Poppy6060 in reply to Poppy112]

Hi I am on pegasys once a week for nearly three months bloods going down slowly side effects not been to bad mostly pains in arms and legs I do feel lucky to have been offered this treatment Good luck with what ever you choose best wishes Poppy

[Jocko]

I am on 45mg Pegasus Interferon Alpha injected once a week. I have been taking since early Sept 2017. Blood count was 1050 Now 256. Mild side effects so far. It has been well worth it and I too am grateful to have had this medication as an option. Good luck.

[Paul123456]

Thanks for replies.

Bearing in mind Interferon and Peginterferon (Pegasys) are to some extent different, why are some of you being prescribed say Interferon rather than Peg?

My understanding is that Peg injections can be administered at longer intervals and this seems borne out by Jock, Poppy and Eleanor on weekly injections of 45mg (the lowest dose?)

Jen - you are on 3 shots per week but what dosage? Wondering if higher dose?

Thanks

Paul

[PT99 in reply to Paul123456]

Paul

I took the plunge yesterday and going to be put on a low dosage of Interferon but over 3 injections per week. I wasn’t given a choice and from what’s been said here, this won’t be peg. What is the difference? Do you know?

Thanks

Pete

[Poppy112 in reply to Paul123456]

I am on 3 MIU 3 x week, this is the lowest dose I think.

[AndyT]

Hi Paul,

I’ve been on Pegasys for ET for just over two years and now only inject 45mcg every 3 weeks to keep my counts under control (down from 1100+ to low 300’s). Hoping to stretch that to 4 weeks soon.

The active ingredient in regular Interferon and Peg is the same - Peg is a slow release formulation of interferon so can be used less frequently and causes less side effects.

I’m lucky that in Leicestershire Pegasys is available as a first line treatment but in some other areas they insist on trying regular interferon first as the cost is lower.

Good luck with whichever you go with!

Andy

[wormwood]

Hi... im on interferon not peg. Im.on 4 injections a week which is 12mu altogether. I do have some side effects but its working at keeping my counts down. So i put up with them.... i too am glad to be offered this treatment. I was on hydroxy but it stopped working.

[jenny_p]

Hi there I've was switched to the peg interferon after a few years on regular. As other people have said the difference is slow release so once a week injections rather than 3 times a week. I found this much better to tolerate than the regular. It's much more expensive though so my haem had to go to nice to make a case for me having it, working mum with 2 kids want our reason. Quality of life, affecting work could be used I'm sure. Incidentally I was on interferon for 10 years in totalks before switching to hydroxy. This was after devision to have no more kids so had other drug options. I can't tell our how much better I felt 6 months after stopping the interferon!

[Hidden]

I am on Peginterferon too, I am on the smallest dose of 45mg every two weeks, and within 3 weeks I was elated to find that my platelets had literally fallen by 50% to just over 480,000 which was amazing.. I still struggle with fatigue but had some iron via IV and I hope that I start to feel the benefits soon. Just done my 3rd injection. I am blessed that my hospital is Guys in London so I can get this because I know it is expensive and not everyone can get it prescribed. The first injection I had some mild flu like symptoms but otherwise after that first time I am fine. Peg is better tolerated but more expensive and some hospitals won't prescribe it so it just depends so I would ask your consultant what options you have. Good luck. I was wary to try drug therapy as I have always avoided it but now coming into my 9th year since diagnosis of PV I am glad I made this decision now. All the best and keep us updated.

[francesb]

Hi, I had Peginterferon for 11 months, many months on dose of 290 as lower doses did nothing. This brought about a slight reduction but the dose was unsustainable as I was ill all the time on it. It just wasn't for me but I have a complicated diagnosis so don't be put off by my experience. At the lower doses I found it virtually side effect free, it just didn't work! Best wishes, Frances.