Anaemia and neutropenia with Peg?

[LucyGeering]

Hi!

Does anyone have any experience of having severe anaemia, and / or neutropenia, while taking Peg? I’m currently on 90mcg Pwg weekly for post-ET MF, JAK2+. I’m 41yo and eat a pescatarian diet including all the leafy greens. I’d be interested to hear if anyone else has experience of these side effects. Thanks for reading.

[JediReject]

Hi Lucy, , just having a catch up and browsing through the posts and read yours. . Peg is one of the few drugs I haven't had throughout my MPN journey so I can't help you directly with your query. But I was wondering if Peg is the cause of your issues can you not be put on another drug and as you are post ET MF Ruxolitinib might be worth a go depending what stage your MF is at. It could be a drug for much further down the road. I hope you get sorted out because you must be troubled with fatigue.

Regards - Chris

[LucyGeering]

Hi Chris,

thanks so much for your reply! I think I’m going to speak to the haemos about treating the anaemia. It is pretty severe. I’m so used to managing symptoms and side effects as and when they appear that I no longer have a clear picture of what’s acceptable and what’s not, healthwise! I wonder if you find that too?

Best wishes,

Lucy

[JediReject in reply to LucyGeering]

Yes I think you should because as you say its not always easy to pin down causes and easy to lose sight of your 'norms'. It's funny you should ask me that because recently after a spell of being on an even keel for me my 'norms' have changed for the worse recently. I got an appt with my consultant who has asked a Rheumatologist at my local hospital to see me though question when that will be because of the Covid backlog. I can deal with the pain and discomfort mainly in my leg muscles and back but really need to know what if anything has changed and the reason I'm much worse.

I hope you get an appt soon !

Chris

[LucyGeering]

Oh good luck Chris! I really hope it’s made manageable for you, ideally of course it’ll be completely fixable 🤞🏽 - not an unreasonable wish...

All best,

Lucy