Platelets increase on Peg

[Dovakin]

Hi guys! I've noticed several posts from people getting Peg that their platelets are increasing. In our case (polycythemia vera) one of the reasons to get Peg is to decrease the number of platelets and erythrocytes.

Is it common for Peg to increase platelets instead of decreasing them? Or is the increase mentioned by people on Peg just the system self-adjusting after previous hydroxy treatment?

[hunter5582]

HU is more effective in controlling thrombocytosis in the short-term. For those switching over to PEG, it could take some time for the PEG dose to reach its efficacy. I have never heard of a rebound effect from discontinuing the HU. I would think it is more a matter for the MPN resuming its overproduction of blood cells that the HU was suppressing. It just takes some time for some people for PEG to show its full effect. Also dose titration is sometimes needed as most docs will start low and then titrate up.

[Dovakin in reply to hunter5582]

Thank you for the clarification!

All the best,

Dovakin

[Wentry]

Hi Dovakin,

My platelets have risen since starting Pegasys 5 weeks ago by nearly 200, I’ve only been on aspirin till now. I think some of the rise may be a reaction to an internal bleeding injury that probably made me produce more platelets to compensate 😉 Other people report also having their platelets rise even when not transitioning from Hydroxy. It goes back down again after a while from what I’ve heard, so I’m not worried, it can be a very slow acting treatment so I’m not in any rush to get my platelets down 😊

Wendy

[Dovakin in reply to Wentry]

Thank you so much for sharing this, Wendy! We'll keep that in mind!

[MistyBlue2]

HiMy platelets went up at first (only ever been on aspirin beforehand) but after a few months they began reducing well

[Dovakin in reply to MistyBlue2]

Thank you, MistyBlue2! That's also insightful!

[Raphael_UK]

My platelets went up higher in the first 2 months than they had ever been with HU, then dropped to lower than they ever had been on HU, so i guess it is self-adjusting. Its complete stable now.

[Dovakin in reply to Raphael_UK]

Appreciate you sharing that, Raphael_UK!

[Hopetohelp]

Mine went up initially but only by about 50 then came back to regular count. Staying steady. Still playing the waiting game for them to come down. Any injury with bleeding or bruising will cause them to go up. Hope yours come down soon

[Dovakin in reply to Hopetohelp]

Thank you, Hopetohelp! All the best on your journey to optimal health!

[Wyebird]

Hi, I’m on Peg and I fear I might have to increase my dose but it’s early days. Apparently some people take 6 months to respond to Peg.Also I’ve tweaked the time I take my injection quite a few times. When I had Covid I took it 2 days later. I went on holiday and on my return took it 1 day late. Looking after grandchildren or if I’ve got an outing planned I also might take Peg late.

So I reckon I could be coming up close to missing a dose. If that’s the case I’m happy.

[Dovakin in reply to Wyebird]

Hi Wyebird!I've also read that it can take a while for Peg to noticeably work. It's a bit of a journey, so we need to stay patient

[Wentry in reply to Wyebird]

Wyebird some people report it taking up to 2 years for their counts to come down, I guess it depends how high they are to start with and what other symptoms and risks we have as to whether the dose should be increased or not 😊 One reason I chose to start Pegasys early was to preempt the haematologist being keen for me to increase the dose if I don’t have a fast response, I want to take my time on the low dose and see where that gets me. I’m planning on staying on 45mcg for as long as possible 😊