Experiences with

Pegasys

I was on hydria pills for 6 months and then started with pegasys. 135mcg weekly then drop to 90mcg. I have been taking 90mcg for almost an year. Side effects are often affecting my life inclusive family around me.

So, I've been on Pegasys for about two years now ( PV diagnosed 6 years ago) and my allele burden has gone from 80% to 30% so far...

I recently found out that Hoffmann-La Roche discontinued Pegasys and the worldwide rights for it were acquired by pharma&. Does anyone know what new brand names it is currently sold under? Or any peginterferon 2-a alternatives available in Europe?

6 weeks in and latest call from consultant: Platelets: 395, Hb: 155, Hct: 0.459 Will stay on 3x500mg a week for a while longer as PEG can take time to fully kick in, but liver, kidney and thyroid function all good and NO adverse reactions to date! In the gym now, renewing my vows to the cross-trainer

I have also experienced some itching with the Besremi (Pegasys too). Fortunately that has been well controlled with Claritin. If it appears I will not tolerate the 150mcg dose, the MPN-doc wants me to drop back to 125mcg and try that. He does feel the Besremi adverse effects are dose related.

With that, I’m curious if anyone has had a bout of covid while taking pegasys and what their experience was? I’ve not seen many of us who take pegasys come down with covid.

ET with CALR, on warfarin and 45mcg Pegasys every 4 weeks. 3 vaccines, last one in November. Just when I started hoping I was going to remain one of the few... COVID got me.

I always assumed it requires immediate refrigeration ‘Store in the refrigerator at 2°C to 8°C (36°F to 46°F).Do not leave PEGASYS out of the refrigerator for more than 24 hours. Do not freeze or shake. Protect from light.

I received an unscheduled call from my haematologist this morning to say that I’ve responded very well to PEG and that, consequently, I can now lower my weekly HU dose from 5 x 500mg to 3. Furthermore, she anticipates I can stop it altogether by the time of my next appointment, in 2 weeks’ time. So far

Probably starting Pegasys shortly. Seeing Haematologist tomorrow. Should I be pushing for a 4th Covid jab. Had 3rd one in September. Also does interferon make you more prone to infection? Thanks

Mesa recommendation for the 45mcg Pegasys to Besremi conversion of 63mcg. Given that my HCT just popped up a bit for whatever reason, I consulted with the MPN Specialist about starting at 100mcg, which is the standard starting doe of Besremi (unless you are switching from HU).

- 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!

dx 2016, JAK2, TET2, PV, MPN-U, Pegasys peaked at 120 mcg weekly, currently 30 mcg every two weeks since WBC over suppressed

I have three doses of Pegasys left, which I will use up before starting the Besremi. I am planning to follow Dr. Mesa's recommendation for the starting dose for someone stable on 45mcg/week of Pegasys - 63mcg/every-other-week of Besremi. We will see how that goes.

Per Johns Hopkins MPN Clinic nurse, PV + Pegasys does not make me high risk. Planning at this point to just ride it out. I am all stocked up and will just isolate at home. I was not planning to be part of the database of people with PV and COVID, but can now add to the data.

Hi folks, started PEG 6 weeks ago and it will not allow me to sleep, it won’t even let me nap during the day. On top of my 14 hr a day profound fatigue it has been a complete misery and I also hate the feeling of sleeping pills in my system. Thinking I may have to quit it, the alternatives depress and

I’m now on a maintenance dose of pegasys. Started pegasys in 2016. In the Early years within 30mins of injecting I felt very tired and experienced a good deep sleep on my injection nights. Over the last year - not every time - maybe 50% of the injections I have difficulty sleeping.

Has anyone else on Pegasys lost weight. I seem to be losing 1lb a week and have now lost 11lbs in the last few months even though I’m eating the same amount as before.

I have ET CalR mutation and inject Pegasys interferon once a week. I’ve never had any issues with vaccines previous to my diagnosis apart from mild side effects so I’m wondering if my extreme reaction might be to do with Pegasys?

He will be starting Pegasys interferon on Monday at a starting dose of 45 micrograms. I've joined this forum to get as much information as possible to help us know what to expect from people who are actually going through the same thing.