Quarterly follow up - switching to interferon

[dbus1417]

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..

[Bellakeira]

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

[dbus1417 in reply to Bellakeira]

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

[Bellakeira in reply to dbus1417]

I'm sure it will all work out for you it seems most can tolerate the peg and better on your body me thinks 😊

[AndyT]

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!

[dbus1417 in reply to AndyT]

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?

[AndyT in reply to dbus1417]

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!

[dbus1417 in reply to AndyT]

wow I’m hoping I have the same result. My allele burden is less than 10% per my genetic test. I am actually looking forward to taking the interferon to nip these bad cells in the bud 😈