Hi is anyone out there taking Pegasys (active ingredient peginterferon alfa-2a)?
I have been Hydrea, (hydroxicarbomide) and my onc wants me to inject with Peg to get the platelets down. I feel perfect and don't like the idea of injecting this stuff (don't mind at all putting the needle in though)
Be interested to know of side effects if anyone can help
Are your PLT not controlled with HU? What is your PLT level? HU dose?
I switched from HU to IFN (Besremi). Pegasys (PEG) is the other IFN used for MPNs. I had good blood counts on both, but switched to IFN for its potential benefit of reducing the mutation. So far it is reducing my Jak2 and holding my blood numbers. HU can reduce mutation too, but its benefit there usually goes away after the 1st year while IFN can benefit for at least 5 years. But the benefit of reducing mutation is still being studied and not everyone gets it.
Has your Dr discussed the potential mutation benefit of IFN?
Table 1 (page 4) in this reference summarizes the various possible adverse effects of Besremi (PEG has similar ones)
accessdata.fda.gov/drugsatf...
Your Dr would order frequent blood tests while you start PEG to check for progress and any concerns. The two liver values in the table, AST and ALT, are some that are watched.
To limit side effects your Dr should be starting your dose relatively low (45mcg/week is common but not always) and increase as required and tolerated.
HU also has a list of adverse events, although they are different. It seems you've been ok with them on HU.
Hi I’ve been injecting for two and half years and it’s fine. It’s helped my platelets to be in normal range. There are side effects but I’m monitored regularly so that’s ok too. Once you get used to it the injection is easy. I do it every three weeks.
Loss of appetite, weight loss, severe anxiety, mood swings and changes to heart rate. My skin was less itchy, bone and joint pain almost nine existent. It does the job for so many I wasn't one of them and my platelets didn't drop at all. If your counts are good and you tolerate hu why does heamo want to change.
I’ve been on Pegasys for ET for 7 years and it works very well for me.
Normally no side effects at all but recently I got flu like symptoms after injecting, just for 24 hours. Hopefully just a one-off as it’s never happened to me before!
Have you done any vaxes (flu, covid) lately?
I’ve been on Pegasys for about 8 months ( dose 90mcg per fortnight ) and have not experienced any side effects.
Been on peg for a year and a half and going fine. No side effects. It suits some but not others, a bit like hydroxycarbamide. Worth giving it a try. You can always switch back. If you do try Pegasys drink loads of water. Good luck
Hi, I am in the process of switching from HU to Pegasys, started mid September and had four doses so far. I inject 45mcg every two weeks and am very gradually reducing the HU dose (was 500mg every day, now down to 5 days per week). Blood values are nicely controlled especially whites in my case. As for side effects, bear in mind that it is extremely individual, we are all different. In my case, I had a bad session of shivering and flu like symptoms a day after my first dose (pegylated ifn is slow-releasing). With further doses it was a lot milder. Paracetamol can be used and it helps. To know how you would react all you can do is try.
I take it. 90mcg every Wednesday. Small red patch on injection site and slightly thinning hair, but nothing to write home about. Keeps counts stable. Female aged 53, Hampshire.
if you read all the forums you will discover that Pegasys has a very enthusiastic fan base thanks to its ability to reduce/modify disease progression. A couple of years ago my highly regarded Hem said that Pegasys ie interferons is as close to a cure as is currently available.
The interferon gurus, such as Dr Silver, say start it asap, the earlier the better, in order to delay/stop progression.
Needless to say, I’m on it hence the cheerleading, no side effects. Evidently it’s not good for those liable to depression and it doesn’t work on everybody.
Google search Dr Silver
Is the Hydrea not working? I was on it for 7 months and it only brought my platelets down a little and that was after 4 months on an increased dosage. I think in the long term Pegasys is better and eventually I will be put on it.
The listed side effects are a bit scary but not everyone experiences all of them.
From what I've read take two paracetamol 1/2 an hour before injecting and then go to bed. If next morning you experience flu like symptoms keep taking paracetamol, as directed, until you improve. Also, drink lots of water day of and after injection.
Good luck.
Hi,
I've been on Pegasys for nearly 2 years as I wasn't able to go on hydroxy. I started with weekly injections (45mcg) and my platelet count came down from 700+ to the normal range in about a month. After a few months, my injections were changed to fortnightly. I was scared about injecting myself at first, but now it's over in seconds.
The only side effect I suffered, was extreme fatigue but when I changed from injecting in the mornings to the evenings, I no longer suffer the fatigue because I sleep it off.
I'm sure you'll be fine!
LadyA
hi there,
I’ve just started Pegasys. It’s my first experience with treatment for my MPN. I chose it because although it has harsh side effects, it allows me to breast feed and consider another child.
I’ve been taking it 4 weeks and started at the lowest dose of 45mcg. I’m up to 60 now as I’ve requested a very slow increase. So far I’ve noticed I’m definitely more agitated. My hair is thinning some and the texture has changed. I’ve also noticed dry mouth. As of yet, my platelets have not decreased at all.
I’m still experiencing many symptoms from my MPN which is ultimately what we are trying to treat.
Best of luck!
Sorry to hear that you are so symptomatic. I don’t know whether you have tried an anti inflammatory diet and NAC supplements? There is an ongoing study by Angela Fleischman which has had promising results in terms of reducing symptom burden.
MPNs are an inflammatory condition and we know that Interferons are not so effective if high inflammation say from smoking and I assume diet choice. Exercise also reduces inflammation
Best Paul
thank you Paul! I definitely notice a difference when I’m taking care of myself. Exercise has been instrumental for me. I get way more symptoms when sedentary. Yes, diet is key as well. I definitely have room to improve.
Thank you so much for your response.
Are there some early results from the NAC / MPN study?
I’ve been on for over 3 years now. Never been on anything else. It does a good job at keeping platelets in good range & is easy to inject. Side effects vary from person to person it would seem but most find manageable & short lived👍
hey. I took h.u for 4 years and switched to peg. No side effect at all on both. Good luck
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