What to expect at start of Pegasys?

[RoundTheWorld]

Hello. A question for those of you with PV on Pegasys Interferon please:-

If you had side-effects were they from the first injection or did they emerge later? I know this will be dose / individual dependent (I don't yet know dose or frequency). Trying to work out when best to start with family commitments.

Thank you

[ainslie]

I suspect there is no clear answer to that, some like me got sides right away and for others it can be months or years later, still worth trying though.

[RoundTheWorld in reply to ainslie]

Thanks Ainslie. I'm keen to give it a go!

I've realised that there has been a lot of discussion around this topic previously on this forum so will do a bit more research. I imagine everyone is a bit different in their reaction and I'm hoping to be on a low dose so fingers crossed for a smooth start.

[ainslie in reply to RoundTheWorld]

If poss start low go slow, 🤞 good luck

[hunter5582]

The standard first dose is 45mcg. I had no immediate adverse effects at all. I did the first injection at the hematology office so the nurse could train and observe.

I agree with anslie about low and slow. Start low and be patient. PEG takes time to do its work . There is no need to be in a hurry.

[Andyf24]

Hi I have PV and after 7yrs of venesections advocated to switch to Pegasys. Started at 45mg and first injection within 2 to 3 hours had a lot of aches and flu like symptoms...bone ache particularly around my hips and lower back...lasted maybe 2 days...2nd injection the same but more bearable..by the 3rd just a noticeable ache in the bones....by week 6 I was asked to go to 90mg...and was nervous of the effects..but I must say I didn't see any spike in side effects...I'm 3 months in at 90mg and just have very light aches for an hour or two after injecting so tend to do it early evening.... That's my experience and in myself feel much better than iron depleted after venesections

[RoundTheWorld in reply to Andyf24]

Thanks Andy. That’s v helpful. I’ve had an offer of some family help so will time it around the first injection and a couple of days after and see how it goes. Much appreciated.

[ainslie in reply to Andyf24]

Useful post 👍

[Mrs_Average]

Hiya. I have MF and the group here were great. I am on 45mcg 1x per fortnight. Symptoms have been low, at the beginning maybe a bit of flu like symptoms but minor, and if I have taken the injection in the morning I have noticed a headache, but paracetamol does the trick. The only thing I noticed was to cover the injection site in the sun to avoid a reaction. Otherwise , I agree with others on low and slow. Good luck

[RoundTheWorld in reply to Mrs_Average]

Thank you. Really appreciate your reply.

[eladhil]

for me no side effect on peg or h.u, I started 180 mg and now 45

[Scaredalone]

I wonder if you started it yet and how your symptoms were? My husband hopefully starts in next few days.

[RoundTheWorld in reply to Scaredalone]

I'm a little nervous as starting tomorrow. Hope your husband has been feeling ok since starting and that he has a good response to it.

[Scaredalone]

he didn’t really notice any side effects. Second dose tonight - hope for the same. Best of luck. They did give him two paracetamols to take half an hour before.

[RoundTheWorld in reply to Scaredalone]

That's good to read! Thank you for the update. Hope your husband's second dose is equally side-effect free.