Switch from HU to Pegasys

[FG251]

With thanks to Hunter and ETGuy for their ongoing advice and support, I made the switch this morning. My first (supervised) injection was easy and painless; I now just have to hope that I don’t suffer any major AEs - just taken two Paracetamol! - and that I can continue on Pegasys once we have the results of the next couple of blood tests! Platelets currently sitting at ~410, on 5x500mg HU per week. Watch this space!

[hunter5582]

Good news! Hope you respond to PEG as well as I have. I find it to be more effective and easier to tolerate than HU.

All the best.

[FG251 in reply to hunter5582]

Thanks - six hours on, no flu-like symptoms yet!

[eladhil in reply to FG251]

Hey. I also switched from H.U to Pegasys. No side effect except enlarge spleen

[EPguy in reply to eladhil]

INF is not usually implicated in enlarged spleen. Has your Dr told you of such a connection? Jakafi (Rux) is known for its ability to reduce spleen; if your spleen is a concern you may want to discuss that option with your Dr.

In this reference (I don't know which study they are referencing and wouldn't entirely rely on this one) :

verywellhealth.com/interfer...

<<Up to 80% of (PV) patients treated with interferon alpha achieve control of their red blood cells, a reduction in symptoms (including pruritus), and a reduction in spleen size.>>

[eladhil in reply to EPguy]

Thank you. Maybe I need more time on Pegasys to see reduce my spleen. My doctor change my Pegasys dosage and add H.U to try reduce my spleen. I will wait and see.

[Poppy6060]

Hi well done on doing your injection and hope you continue to feel well and it works well for you best wishes Poppy

[FG251 in reply to Poppy6060]

Many thanks - will post again once I’m ‘out of the woods’ and have the blood test results. So far, so good!

[21Rosie]

Well done. Fingers crossed that you receive the desired results.Peg is working very well for me and the injection process is very simple.

I’ve been on it now for 3 months and occasional S/effects but hard to know if it’s the PV or the Peg ??

Wishing you a very successful switch. Love to hear how your CBCs respond.

Rosie

[FG251 in reply to 21Rosie]

Thanks! Yes, teasing out what’s the MPN and what’s the medication is tricky. My haem is overlapping the HU and Pegasys until the latter kicks in, but I’ll post again when I have further CBCs. Be well!

[Wilbert2018]

Peg has been working for me for the last couple of years, with limited side effects, and nothing like the long list of potential adverse effects that are shared with patients before starting it.

I do sometimes get a bit of lethargy (but hard to separate out from what is the ET vs peg) and feel a bit flu like the day after. Like you, the specialist recommended i take paracetamol with it. The only other thing you might want to consider as you carry on, is the timing that you do the injection - when I started, it was strongly suggested that I do the jab in the evening; that way, if there were any flu like symptoms, theoretically it would be while asleep. I’m not sure whether you work or not but I work full time so doing the injection in the evening means hopefully most temporary side effects have eased by the next day. Being ok to work was really important to me as well when thinking about what medication to use.

Hopefully you’ll continue positively and won’t get any significant side effects. I’m really pleased I said yes to Peg over other options. Hopefully you’ll feel that way too.

[FG251 in reply to Wilbert2018]

Thanks for replying. I had planned on doing the injections at bedtime, but the first was supervised at the hospital - at 10:30am! Perhaps I’ll do the subsequent ones a few hours later each time, until I reach bedtime, but so far, so good! Overall, from what I’ve read, and from what others have posted, I’m happy I’ve switched. This is, of course, dependant on satisfactory CBCs, thyroid function, etc., so fingers and toes crossed!

[Hopetohelp in reply to FG251]

Yes same here. First injection with nurse was in the morning so since I didn’t have any side effects I kept with that as gives me a chance to drink loads of water as they recommend. Good luck and let us know how you get on

[FG251 in reply to Hopetohelp]

Good point re. water, although I’m always up in the night now regardless!

[Bluetop]

Good luck with this. Keep us posted.

[FG251 in reply to Bluetop]

Thanks - will do!