MF Pegasys and fatigue / body pain

[Mrs_Average]

Hello

I have had MF for about 7 or 8 years, previous ET. I have been on Pegasys for about 18 months now and was on lower dose of 45mcg every 2 weeks. This has been adjusted to 65 mcg every 3 weeks to help manage supplies.

Blood stable, although I am anemic at 108, and red blood cells are now also slightly below normal.

I have been busy and have been pushing myself, although have been resting when the fatigue hits, which is probably the problem.. need to stop before..

The reason for posting is that I have been getting a lot of all over body pain with the fatigue and even as I am lying down here it is not subsiding.

Two questions , does anyone else have experience of this?

And do you have any top tips for managing?

Thanks in advance !!

Hope you are all doing well x

[hunter5582]

Fatigue, arthralgia and myalgia are all possible Pegasys side effects. Side effects are dose dependant. Any change in potential adverse effects is something you need to discuss with your MPN care team. They can give the best advice on what to do.

[Mazcd Partner MPNVoice]

I am so sorry that you are experiencing fatigue and body pain, we have some useful tips on managing fatigue which might help you, but I would also suggest that you speak to your haematologist or clinical nurse specialist about it and particularly the all over body pain, so they can help you with both.

mpnvoice.org.uk/living-with...

[Nerjalover]

I had 26 years of ET and 1 year of PV before being diagnosed with MF last week after a bone marrow biopsy to see where things were definitely at! I was on Peg interferon for 5 years and had all of the symptoms you have. I found a couple of paracetamol did help and have a sleep to combat the fatigue worked wonders- even 20 mins - - just listen to your body. Also watch your liver results - this is so important as I had to come off it as it did affect my liver! I do hope you are under an MPN specialist - this is SO important- I know from a poor experience !

Good luck!

[Mrs_Average in reply to Nerjalover]

🙏Thank you for sharing your advice , and sorry to hear that you have had recent MF diagnosis. Hope you are doing well

[ainslie]

the fatigue is very common but if it has increased and you have developed pain it’s best to discuss with your Haem, they may suggest a BMB and or possibly a change or addition to your current meds

[Nerjalover]

rest when you feel tired- and take paracetamol for pain. Good luck! I’m just starting on my MF journey - I start Rux on the 30/4 . Hope it helps me?