Help

[CK79]

Looking for some advice from an experienced ET sufferer. I have recently changed from Hydroxy to Peg Int, and as a result was feeling so much better that I started running again after a couple of years off. My problem however is that my platelets have doubled in the space of 4 weeks back up to 990. I’m being told that the running would not be causing this, but wanted to see if anyone had any experience with this?

Any help greatly appreciated. I had been holding steady at 450 after 12 weeks on Peg until I started running

[hunter5582]

There are things that can cause reactive thrombocytosis - bleeding, injury, inflammation, infections. I have never heard of running being an issue. Even if you had some mild inflammation, I would not think that would be enough.

It may be that your current dose of PEG needs to be adjusted or that you just need to give it more time. PEG typically takes longer to be effective than HU. It ay be that your ET is returning to baseline as the impact of the HU had ended and before the PEG can be effective.

I would certainly be sure to review this with your care team.

[CK79 in reply to hunter5582]

Thank you so much for your response Hunter, always value your insight. They have increased my dose from 75 to 135 with immediate effect so fingers crossed this will start to take effect. Feeling so much better on Peg than I was on Hydroxy & would be gutted if I had to revert back to it.

[hunter5582 in reply to CK79]

Hope the PEG works without adverse effects. Like you, I could not tolerate HU. The good news is that there are more options like Jakafi and anagrelide. Others are in clinical trials.

Hope all goes well.

[Meatloaf9]

Hi, I have read on this site that the Peg can take up to a year to see results. Some posts on this site have said that some have tapered off the HU while starting the Peg to prevent the large rebound in platelets by stopping the HU. Best to talk your situation over with your treating Doctors to determine the best way forward. Good luck to you going forward.

[EPguy in reply to Meatloaf9]

The Proud PV Continuation PV study on the newer Peg INF ropeg it took 3 years to see the trend of the full benefits. I think they started with low doses and titrated it up as you noted for Peg.

[Wyebird in reply to Meatloaf9]

My hu was reduced over a few weeks but to think that the body can take up to 1 year to find the right level is remarkable.

[Meatloaf9 in reply to Wyebird]

I think we are truly all different in how we respond to medications as well as how our disease behaves. It seems from reading posts that some respond to Peg in a relatively short time and others take a longer time to respond. Here is hoping that you get your dosage adjusted quickly and that your blood counts all come into line. Please keep us all informed as to how things are going on the Peg. Best always.

[Wyebird]

Really awful for you, hope you don’t have to increase your Peg too much.