Hi ET peeps. I am on this forum from my son who was diagnosed with ET after a stroke at age 10 . he has been treated with Hydroxyurea untill last year when we switched to Ruxolitnib. The later has been less successful at getting his Platelets down below 1,000. I have noticed lately a lot of people talking about Pegasys. Just interested in peoples experience with this drug?
For those being treated with the drug, can anyone tell me why their Dr chose this treatment over others, and has it been effective? What are the side effects?
We are based in Australia and from what I can tell this drug has been added to our PBS system, so assume we can get access.
Interested in your thoughts ??
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Louforjack
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Hi, I started Pegasus a few months ago, my platelets were consistently above 1500 and rising with Von willebrands complications setting in. I am 37 year old female who is still considering whether to have a 2nd child therefore in the eyes of my haem Pegasus was the only choice. It also seems to be the one preferred in the UK for younger patients however in my opinion there is no exact science behind this so I could be wrong.
On regular interferon (daily injections) I had some bad side effects so was quickly moved onto the Pegasus and weekly injections. As the dose increased side effects appeared so I am currently at the highest dose I can tolerate (180). That being said it still makes me tired; anxious and irritable, I will caveat that I have a 16month old so sleep and rest time is always readily available in my house!😃 I have also experience hair loss; itchy skin; spotty skin and very rarely the feeling that I can’t control my body temp.
However I am getting used to it so each week it’s less difficult to manage. All things considered it’s not bad and doesn’t have some of the restrictions and complications that I believe may come with the other medication options.
I hope you find the right thing for your son. Good luck.
Firstly, I am really sorry to hear of your son;s dilemma in having to deal w/ an MPN so early in his life.
Secondly, I am also in Sydney, Australia, and recently started an Australian Patient's FORUM that you might like to look in on from time to time: mpn-mate.com/
Third, I also have Post ET/MF. Personally, I haven't tried the Pegasys' as yet, but may well be forced to look at it shortly in absence of another option, as I too suffer from extremely high Platelets, (latest 945), and I am presently searching for other potential treatments that might benefit me also...
There is another mum in Sydney, who also has a 5yo daughter who has ET/MF and has been on HU since she was 1yo...
Please feel free to contact me directly via Private Messaging (PM), if you feel we might be able to assist one another's journeys somehow...
I'm 38 and I'm on the lowest dose once a fortnight. For me that's been enough to bring my platelets from 1500 into the normal range (and keep them there). I've had no side effects at all. Everyone's different but for me it's great.
Hi I've been on Pegasys for about four months now and my platelets are in the normal range for the first time in years after being at nearly 1000. My haemo suggested this drug as it is more well tolerated than hydroxy and I've had no side effects or issues so far.
Wow you are lucky to be in normal range after 4 months. My platelets are at 434 and I still need to get to 375 and I have been taking it for about 8 months.
When I was diagnosed with ET a couple of years ago I looked at the options. For me Peg seemed the best choice. Fortunately when I saw my consultant he agreed and it's been all good. Platelet counts are down with minimal side effects. It's been a great choice for me.
I can only tell you that within three weeks of starting a very low dose (45mcg) of Pegasys weekly, my platelets dropped to within normal range where they have stayed. I now inject every 10 days, same dose and continue to stay within range.
I have been using it since June 2018, following dire reactions to hydroxy. I do get many side effects from pegasys but tolerate these.
Also, if you take a look at a few threads (and my haematologist confirmed this) a number of people have gone into regression following use of Pegasys. That has got to be a positive reason for using it.
By the way, without listing all the side-effects I suffer, I can say that for each there is a remedy that seems to bring it back into manageability. Is that even a word?
All the best and I hope Jack is soon well on his way to success. x
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