Experiences with

Pegasys

Can I have an occasional glass of wine while taking pegasys?

Due to the Pegasys shortage I have moved from 90ml fortnightly to 180ml monthly. I count myself lucky that I can still get Pegasys but my bloods have risen now, after a decent period of stability. I didn’t realise that you could split injections from a syringe over time. How do you do this?

Hi everyone, I have just been advised that I will need to switch from Pegasys to Besremi due to the UK shortage. Please could anyone who has made the switch let me know how they got on and if there have been any issues or concerns?

Has anyone, with Hashimoto's, had any adverse side effects while using Pegasys? Ever since I was switched from Hydroxyurea to Pegasys, my body has had an explosion of pain, ranging from headaches to GERD to sinus issues and beyond.

I am about to start week 9 of Pegasys Interferon. The first week went as suspected with flu like symptoms, then every week after the side effects got less and less, until week 7. Week 7 had me vomiting for hours after the injection, but subsided on its own.

I have ET and been on Pegasys 45micrograms every 17 days. I have been on it since April 2024. My nails have become brittle and are splitting longitudinaly. Has anyone else experienced this.

I recently changed my Pegasys dose from 45mcg every four weeks to 90mcg every eight weeks, because of the current shortage.

you have ever switched between Pegasys/besremi.

I have been on Pegasys for the two years since my diagnosis of PV at age 59, initially on a weekly dose of 45 mcg and for the last year on 67.5 a fortnight.

Just had 3 monthly telephone call with consultant. I tested positive for Covid two days ago, she recommended I take the anti viral. My bloods all stable. She then said oh you will need your pegysys. I said yes thinking i would have to change due to shortage. Hospital pharmacy are delivering it tomorrow

Given the global shortage of Pegylated Interferon till July 2025, I, like others, have been asked to increase my dosage but decrease the frequency of my injections. I was previously administering 45mcg a fortnight and was told to increase this to 90mcg every three weeks. Personally I’m happy with this

Hi can anyone tell me the difference between hydrea low dose to interferon as I am possibly switching from pegasys interferon to hydrea in the next week or so because of shortage thanks all

I gather this can be Pegasys induced? I also have a low Basophil reading of 0.1 (UK readings). I certainly have most of the symptoms! Has anyone experienced this? I have an appointment with my Team 11th November.

https://www.ema.europa.eu/en/medicines/human/variation/pegasys It looks like Pegasys has been approved by the European EMA for treating PV and ET. Although Pegasys has been used to treat these diseases for some time, it was previously off-label.

I just had to change from Pegasys due to too many side effects, and was put on Jakafi. My question is does 15 mg. twice a day for a woman that is 110 lbs. seem like a lot? From what I read it seems so to me.

PV was confirmed and after some initial phlebotomies to lower HCT I started on Pegasys. I was also feeling a bit off - tired and foggy. My initial Pegasys dosage was 2.5cc (45 mcg) weekly, increased to 5cc (90 mcg) weekly a few months ago when my HCG crept up. Since then all WNL.

Following a diagnosis of mild Sjorens my consultant is recommending another jak2 allele burden test ( yes in uk you can now ask for another one rather than be left guessing) and a potential break from Peg. My concern is that if heamocrit numbers start rising again, it takes so long for Peg to 'work'

I’ve not had any side effects to the Pegasys. I feel great on the Pegasys, and all my ET related symptoms are gone, including the one that was most persistent - burning feet.

But it could be a change in Pegasys regime. Yes, I push myself and don't rest enough sometimes. I'm no good at doing nothing sometimes 😊

Hi, just wanted to share after about a year being on Pegasys 45 mcg fortnightly my JAK2 VAF dropped from 31% at diagnosis to 26% now.Always happy to see progress. All blood counts in good range except elevated Potassium 5.8 mmol/L which I am not sure why as all previous tests were in range.