hello all
went to my quarterly check up today after being on HU for 3-4 months and the results were less than what we’d hoped for. My platelets came down but have stalled out around the 8-900K mark. I was given the choice of upping the HU to 3x500mg a day or starting interferon.
My hematologist wants to begin Pegasys in conjunction with HU for a bit and gradually transition to pegasys only. Any of my CALR people have experience with pegasys? I am interested in what to expect..
Hi ThereI've just started my journey with Pegasys and still taking Hydrea every other day till it fully kicks in. No issues thus far but happy to be going off the Hydrea been on it for 5 years and that's enough for me.
Wishing you well from Australia
yeah it’s bittersweet. I am happy to get off Hydrea but I am a little bummed i am already having to change treatment 😬 I’ve only been on meds for 4 months
I'm sure it will all work out for you it seems most can tolerate the peg and better on your body me thinks 😊
I’ve been on Pegasys for CALR+ ET for 8 years and have had very few side effects. Don’t worry too much about the long list on the patient leaflet as most are related to the higher doses originally used in other conditions and the relatively low doses used in MPNs are much more tolerable.
I sometimes get tiredness 2 or 3 days after injecting and some itching and dry skin but those can be controlled with over the counter antihistamine like cetirizine and moisturiser like E45 lotion.
Paracetamol and the ability to rest are sensible precautions after injection but hopefully you’ll find, as I did, that you have very little reaction. The pegylation means the interferon is released slowly, which minimises the risk of the flu-like symptoms etc associated with older forms of interferon.
Pegasys has worked very well for me and I’m now just on 45mcg every four weeks, which is very easy to live with!
Good luck!
awesome!! thank you for the response. I have a few questions..
How long did it take for you to see results? Were you on hydrea before starting interferon? How well are your blood counts controlled?
I saw results pretty quickly - platelets down from 1100 to 800 within 2 weeks of starting Peg and to 450 within 6 weeks, after which we started reducing the frequency. Some people do take longer to see results however.
I wasn’t on HU first - I was lucky to be offered Pegasys as a first line option.
My counts are well controlled now - platelets in the 300s and red and white cells within normal range too. Liver, thyroid etc are monitored too and no abnormalities. It’s been a great drug for me!
feeling quite fed up, is it possible that interferon doesn’t work for me? 
Switch from HU to Pegasys
Interferon impact on fertility 
Interferon and Hypothyroidism 
