Onset of Pegasys side effects?

[pnArt]

I'm about to start Pegasys, 45 mcg, at Mass General Hospital in Boston tomorrow for PCV. I live about 2 hours away, depending on traffic, and they keep you 1 hour after the shot as a precaution. Assuming there's no problem in that 1 hour they let me go. I'm planning to drive but I'm concerned about getting hit with severe side effects while stuck in rush hour traffic. I don't mind fever and body aches but I'm nervous about an attack of nausea while stranded in a Rt 128 traffic jam. I'm aware that 45 mcg is usually pretty mild but this is my first time.

Any comments or advice? Thanks in advance!

[charl17]

My first injection was mid-day. I took acetaminophen. I really did not notice anything until I went to bed. Had trouble falling asleep. I would be more concerned about irritability and impatience while driving than nausea.

[Helpatlast]

I started Peg last November and not experienced nausea at all - and so hope same is for you. I had my first injection in hospital and like you had a busy drive home in lots traffic, I was fine. It can be handy to take a couple of paracetamol before your injection it can help with the aches and hot feeling. On a norm once you are using Peg at home it’s good to inject at night before bed and do it on an evening where the next day you can rest up if needed, it tends to be next day or even the day after that, that the effects hit a bit. But hang in there it is good treatment very effective, I am ET and been on Hydrea 13 years but it was no longer working on my platelets and Peg has been so effective and keeping me in normal levels for the first time in a long time so any effects are worth it! Let us know how you get on, all the best

[francesb]

I never had any severe side effects from Pegasys which I was on for a year until my consultant decided to change, I may go back to it. I injected myself at night before bed once a week, never felt nausea just slight aches and hot/cold the next day. I think you’ll be fine. Maybe ask about injecting yourself which is the norm here (JK). Good luck.

[SuET2017]

Hi I started on 90 mcg and except for mild flu type symptoms I was fine. No nausea at all.

I also inject myself. Much easier that having to travel for it.

I hope it goes well. Sue

[pnArt in reply to SuET2017]

Yes, that's what we're doing tomorrow. They're going to teach me how to inject myself. My first time getting it, but also the first time that clinic at Mass General has ever given it to a patient!! I just discovered that a few days ago and I couldn't believe that a major hospital like that had no experience with it for PCV patients!

Their plan is to have me sit for awhile in their waiting area after the shot to make sure I don't have any acute reactions (BTW this is protocol for lots of things, e.g., flu jabs in the US). So I'll bring a newspaper and a red foam clown nose in my pocket which I'll put on behind my newspaper after the Pegasys injection. When they come to check on me I'll tell them I feel fine except for a bit of nasal stuffiness which I assume is from the Pegasys. I hope they have a sense of humour.

Thanks everyone for all the replies!

[JackLina]

Hi pnArt. I have been using Pegasys since June 2018 and have most of the side-effects but never any sign of nausea.

There are so many side effects but to my knowledge, none that would show themselves in the first hour. I am intrigued at the practice of keeping you an hour in hospital after the first injection. what a service!

In agreement with other users here, I would advise a couple of Paracetamol/Tylenol 30 minutes prior to the injection (always take in the evening) and half a sleep-aid before bed.

We all respond differently but I feel that these two needs are common to all, from what I have read. The first night it is definitely difficult to sleep.

I am unbelievably sensitive to drugs and am unable to take most. There is no doubt that I really know I'm taking something my body would rather not have but within 3 weeks, my platelets were in normal range and about 10 months in, I suddenly felt more comfortable with the side effects. I never had more than 45mcg weekly and dropped to every 10 days within about seven or eight months.

The main advice I would give is to keep drinking water. Sip it all day but not a massive amount all in one go. Your kidneys will not appreciate that. Exercise is the other key. I used to play squash regularly and do yoga as well but that is by the board now. the yoga is purported to be the best thing you can do to combat the aches and pains and keep you supple but I do a lot of walking. Minimum 1 hour a day with my dog, who I suspect is related to the roadrunner!

Well that was a lot of words!!!! I hope some of them help. Be thankful you have been allowed to take Pegasys. For me it has been a bit of a miracle drug. All the best. x

[robbjoy]

Have them teach you how to do an injection sub q and just do it yourself. You’ll be fine.

[pnArt in reply to robbjoy]

(posting from MGH Leukemia Ctr waiting room) . . . just gave myself my first shot. Didn't even feel it. Now I wait here for an hour. Preparing the nose...

[pnArt]

I'm happy to report that I gave myself my first shot and it was painless. The clown nose joke worked perfectly and I got a big laugh (I was worried that the staff would laugh nervously and walk backwards slowly...)

These are typical pharmacokinetic curves for pegylated interferon ...

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... as you can see Tmax is about 50 hours so I'll know better then how I do with side effects.

Also the pharmacokinetic steady-state is 4-5 weeks so peak concentrations will get a little higher each week for awhile, so that's the real test.

Once you've been taking it for a long time do you find your body gets used to it and the the side effects diminish?

[Hahag]

How have you been getting on

[pnArt in reply to Hahag]

"How have you been getting on"

After 3 (45 mcg/ml) shots my platelets and WBC have returned to normal for the first time in YEARS. But I've gone slightly anemic (hgb=11.2) and my blood sugar has gone slightly high (129). My red cell count is still slightly high (6.02, max normal would be 5.9) but MVH,MVC are slightly small, so my Hct is in a normal range 41.6). Altogether these are the most normal numbers I've had in years! My next shot is today and I see my hem/onc at MGH Monday.

Side effects: the worst side effect is restlessness/anxiety/feeling "wired" - like being on too many cups of coffee. I've been able to convince myself that "I'm not manic, I'm energised" and I've gotton lots of work done, but not so much sleep. My Dr has given me some Lorazepam for this and it works but I can't take it forever so we hope it passes after my body adapts. The other big side effect is dandruff - technically Seborrheic Dermatitis (SD). I've always had some but α-interferon amplifies the production of Interleukin 2 which triggers SD.

Since I started my Pegasys my PCV itching problem seems to be worse, but for me the itching is totally random and I go months without any and then I get an attack that goes on for a week or two, so this could just be one of those random attacks.

Overall I'm very pleased with this drug because after years of having PCV and not being able to do anything but phlebotomies, I'm finally fighting back!

Thank you for asking!

[Magentas in reply to pnArt]

Hi, can you tell me how you fared with the wired/coffee like effects. I cant keep taking Lorazapam forever either and was wondering if this side effect eventually eased enough for you to sleep. I’ve been on 30mcg for 6 weeks now and coupled with my profound fatigue life is miserable..

Cheers.

[Hahag]

Sounds promising keep going if doing great

[IrishHiker]

Are you able to take the train?