Experiences with

Pegasys

Pegasys (pegylated interferon Alfa 2a) will be on the PBS from 1 August 2018. The Minister for Health, Greg Hunt, will make an announcement later this morning. Watch the news tonight, and see the article below on page 27 of the Melbourne Herald Sun today.”

Iam jak + Et and currently on pegasys Many thanks for your help Ela x

I now have to administer 45mcg Pegasys each week and the dose needs to be taken from a phial containing 90mcg because it seems it is not possible t get 45mcg dose. I'm OK with doing the injection myself but I just cannot get the fluid into the syringe because the needle is so fine.

I used to love the sun when I used to live in southern Italy it got to the forty's in the summer but since I changed years ago from hydrea to interferon then pegasys and now jakafi, I just seem to get really sick and have really bad headaches that last for days after being out say fishing or just going

I need to start my pegasys once a week (90 mg) before bed.

At the appointment they said I should remain on my baby aspirin a day and wouldn't need treatment until I was older for my ET (CALR+) (I am 41) This week they called back saying that my Von Willbrand factor was on the low end and wanted to start treatment right away with Pegasys Interferon.

After a 11/2 years on Pegasys. I finally see my RBC count being lowered and my iron levels slowing increasing. This is with my HCT holding at 38. Nice to share good news :)

I just need some information (other than all the trials and research I've read recently) about side effects and tolerance of Pegasys with clopidogrel. I have read some horror stories. What has been your experience? ATB Penelope

I’m JAK2+, PV since Aug 2017; was on Pegasys now taking a break due to “autoimmune syndrome.” My liver and thyroid were suffering. And because of the low thyroid I’ve been an emotional mess...tearful, moody, a bit hopeless.

Can I suggest that anyone thinking about Pegasys watches this recent video panel discussion between two Interferon bulls.

I was diagnosed with CALR ET two years ago and was on Hydroxrea and the last 6 weeks have been on Pegasys. I have a couple of queries: When you travel with the injections and they need to be kept cool how have you done this?

Pegasys/Interferon really split opinions into those who swear by it and those who suffer unpleasant side effects. So far I’m delighted with it. As others have said, anyone starting Pegasys should, if possible, try a low dose and increase as necessary. Need to build up tolerance.

I have been taking Pegasys since November, and recently started getting mouth sores. It seems to occur weekly, and lasts for about 3 days, then resolves on its own. Thank you for any advice on how to manage the days when it flares up.

Just wanted to say a huge thank you to everyone who helped and replied to my post on Friday regarding my pegasys dose. I have successfully after speaking to the clinical nurse specialist reduced my dose to 90mcg/0.5ml.

Been to the hospital today and have been changed to pegasys. First injection tonight. I am a little worried as I have been started on a dose of 180mcg/0.5ml weekly and am concerned this is a high dose to start with and the side effects which may come with it.

So I met my new Consultant, she is happy that I’m a good candidate for meds as the migraines show evidence of blood flow restriction and is staring me on Pegasys 45mcg on Friday. She was very lovely, knowledgeable and listened to all my complaints lol.

Back at hospital on Friday so thinking about asking to change to pegasys. Apparently needed to try Roferon first. Sorry to moan, has anybody any experience of changing to pegasys and have you felt better.

responding well to Pegasys.

I posted this link earlier, has about 10 Presentations from the recent MPN Asia Conference http://mpnasia.com/site/mypage.aspx?pid=205&lang=en&sid=1206 Too many to watch all of them but the third from the bottom, Panel Discussion with Dr Verstovsek, was excellent If you are on Interferon/Peginteferon

I’ve been on Pegasys 16 months. My HCT is 38, perfect for my flight to Cyprus. Yes I know about the precautions for flying. Looking forward to some Mediterranean food and heat for my body.