Taking Peginterferon

[Tylerdog1]

Today I will be taking my first Peg Interferon injection - starting on 45mcg once a week.

What’s everyone’s routine for taking it?. Am planning at bed time with a couple of Paracetamol and hopefully sleep through the worst (for those that experience side effects - how quickly after taking do you experience them ?)

Thanks

[AndyT]

I inject on a weekend daytime normally but am lucky to have very few side effects. I don’t bother with paracetamol any more and sometimes feel a bit weary midweek but never sure if that’s the Peg or just a busy week!

Hope all goes well for you!

[Threelions]

Hi,

It sounds like you are well prepared👍

I remember the anxiousness when I had my first injection.

I did it during the day at Guys Hospital and then jumped on the tube to rush back home, imagining that at any minute dreaded side effects would kick in😀

I kept wanting, and waiting, and waiting.....finally it was bedtime and I found myself looking for symptoms. I even felt that it might not have actually entered my system!

I woke up in the morning and still felt 👍

People on this forum re assured me before I started injecting and, in spite of my anxiety, they were right👍

In truth I occasionally get very light “flu like” symptoms but not bad at all and easily remedied with the brace of paracetamol.

Good luck, sure you’ll be fine & let us know how you get on👍

[shiftzz]

I've been injecting for some time. I have an alarm set up on my phone to remind me weekly.

I'm on 135, on a Fri night, so what I do is alternate left and right, I remember this by odd and even. Even day numbers LEFT (even number of letters) Right etc.

Sounds strange but it works for me, I was advised to not inject in the same spot. Did try leg, ouch..

[charl17]

I inject 90 every 10 days at 5 pm. I take 1000 mg of paracetamol at the same time. By 9 pm I am wiped out so I go to bed. If I wake up after 1 am I take another 1000 mg. I take paracetamol at bedtime the subsequent two nights. I am 70 and am retired so I don't have to function at peak energy. Without the paracetamol I have some difficulty controlling my body temperature at night. I also seem hypersensitive to stimuli that interfere with sleep.

[Hearingu]

Hi, I have been on 45mcg for a year and levels going down . Feeling well ! Had fear of needles so went to surgery at first for few weeks . Had inj in stomach . Once gained confidence started to do myself and have not looked back . I inj in evening , hour before bed. I useEMLA cream on inj site beforehand. Can get over counter in chemist. Brilliant ! Only side effects I get is itching . However that is drawback of PV. I take 180mg of Fexofenadine at night and drink at least 2 litres of water a day . Diagnosed in 2014.Not exp any flu symptoms and levels keep going down . Hope this helps and good luck 😉

[SuET2017]

Hiya

I inject on an evening on a day before I don’t work as I sometimes, not always, feel really fatigued the following day (I don’t sleep as well the night of injection)

I did get fluey symptoms for the first few weeks but not any more.

It’s been great for me. And I tried everything else first (anagrelide, hydroxy and daily interferon) and had side effects.

I inject myself - it’s easy. I do get reddish/bluish marks that last quite a while at the injection site.

I hope it goes well

[plum27]

I inject 60mg weekly, Monday mornings. Have been for about a year now. Early on, I had aches and pains, upset stomach, headache and I was generally drowsy (flu-like symptoms). Not particularly after the injection - more all the time. Lately, I usually take it easy the day of injection, but today, for example, I injected and worked all day, no problem. Lately, I have only occasional and mild aching in my legs, very mild stomach upset - not nausea but puts me off eating a bit, and sometimes feel a bit tired. But, generally, much improved from when I was taking hydroxyurea and early days with peginterferon.

[JackLina]

Hi Tyler. All these replies/experiences differ from mine and I have to say, I'm rather envious of them all! I DO get side effects. Lots of them but learned to live with them. Three days afterwards, they subside but they consist of 'flu like symptoms (extreme musle aches, sweating and breathing problems), sleep problems, feeling generally unwell, headache, fatigue and mental 'gormlessness'.

My regime is inject around 9 p.m. to take 2 paracetamol capsules (better digested) 30 minutes before injecting, to take half a Kirkland Sleep-Aid when going to bed and to sleep through the night.

If I don't do this, I generally have extreme restlessnes and a maximum of five hours intermittent sleep.

I only tell you this because I think you need to be aware that if you experience these, they are most likely associated with the Pegasys.

I hope you get on OK with it. For me it has been greatly effective and I can vouch for the effectiveness of the drug. In my case it has brought my platelet count within normal range and has kept them that way for over a year now. In fact, 18 months.

I have never dosed more than 45mcg one a week and now dose fortnightly. All the best. Hope all goes well. P

[Jocko]

Hi Tyler,

I am a 56 year old male, who works in an office. I have been taking 45mgs Peg weekly for just over 2years. I decided to do my injection on Monday night's just before going to bed. My theory being that if I had any side effects I would have them at work rather than spoiling my weekend. All good so far , if I do get side effects they are like muscle aches or headache which is easily dealt with by taking a couple of paracetamol. Two weeks ago I was told to inject 90mgs every 2 weeks. I think this is a money saving thing - fair enough. I've not been doing this long enough to see if it's any worse. Good luck

Jocko

[Otterfield]

Although I was advised to do it in the evening, I was quite stressed about it so I started injecting in the morning to get it over with. I get side effects - aching joints, fluey feeling, sweats etc and they continue all week but Paracetamol does a good job at dealing with them. I am more fatigued than I was with other drugs though. I am on 90mcg so on 45 you might suffer less with side effects.

[Tylerdog1]

So far so good 👍.

Second injection had last night. Other than having hot/cold sweats and generally a not very good nights sleep on both nights that the injections were done, am feeling OK. Really didn’t know what to expect and was something causing me unusually high anxiety levels. Hopefully it will continue to be like this.

Good luck to anyone else that is starting this immunotherapy treatment