Pegylated Interferon available in Australia?

[CommonDaisy]

Hi guys,

I’m from Melbourne, Aus. Can someone let me know if pegysus (pegylated interferon) is available in Australia?

I’ve been finding conflicting information online.

I’m seeing a new specialist tomorrow to talk about changing from HU to interferon, but I’m feeling nervous that I may not have access to the slow release/less side effects drug

[socrates_8]

Hey Common Daisy...

I am Steve from Sydney (MF – CALR), my understanding is that Pegasys' is not yet available via the PBS, the TGA has approved it, however, a price has not yet been set, and so Oz is still awaiting the pleasure of the pollies to make it so...

It might be available for those who are happy to pay the full freight, however, maybe you could discuss that option with your specialist...

Best wishes

Steve

[CommonDaisy in reply to socrates_8]

Thanks for your reply Steve!

I just came back from seeing the specialist and he told me exactly what you have just said.

I really hope it becomes available to us soon- it sounds so much more pleasant (or as pleasant as jabbing yourself can be 🤔)

Are you currently just on normal interferon?

[socrates_8 in reply to CommonDaisy]

Hey Daisy... :–)

When I was first diagnosed it was as ET, however, my BMB & constitutional symptoms later changed my diagnosis to MF. Initially, I was started on HU, then to Interferon Alpha, before being changed again to Ruxolitinib or Jakafi...

While I did not tolerate either the HU or Interferon very well, the Interferon did reduce my platelets all the way down to 537, (the lowest they have ever been).

They (my Blood Platelets BPts), are still stubbornly high c. 1M, and only fluctuate around 300 pts as my dosage goes up & down between 20mg bd to 25mg bd, (along w/ low dose aspirin – 100mg).

My pruritus is all but gone since I stopped the Interferon Alpha, however, many say that the symptom burden is greatly reduced w/ the Pegasys' variety...

Best wishes Daisy, & please feel free to look me up for a cafe anytime you are in Sydney...

Steve

[CommonDaisy in reply to socrates_8]

I’m glad you found something that gives you fewer side effects than the HU and interferon!

I tolerate HU quite well but we would like to start a family and I’ve been told interferon is my only option for treatment.

Fingers crossed I can handle it okay 🤞🏼

For sure! Same goes if you head Melbourne direction 😊

[Mackydee123]

Hey guys,

I’m from Northern Ireland where Peg is just about available but it’s seen rather as a trial drug for MPNs, I changed Haem and got in with a professor who heads up the clinical trials unit and has access to Peg, that’s how I got it on the NHS. You should ask around and see if you can access it that way. Just a thought.

Best wishes

Kerry

[CommonDaisy in reply to Mackydee123]

Hi Kerry,

That’s great that you found a way to get into Peg. How is it going for you?

I’m seeing my regular Haemotologist on Monday so I’ll ask him about trials in Australia. Thank you!