Platelets rise again

[hall2]

Hi all I've been on Pegasys for a few months now, 90mcg once a fortnight. Platelets have been dropping a lot but at my regular appointment yesterday they'd risen slightly from 409 to 451. Has anyone else had this happen? Also Hb count was 18.5 which seems high. Previously it was 127. Different doctors seem to record it in different ways. I'm not sure what this means. Next appointment January and still to keep on with same dose of Peg.

[Tico]

Hi hall2, your platelet level jump does not sound that bad because obviously its always never going to be exactly the same and will vary but Hb is a significant jump from the time before. If your concerned I suggest you contact your Cns if you feel januarary is to far away. Atb,tina.🤗

[hall2 in reply to Tico]

Hi thanks for your reply, I might do that.

[Aneliv9]

Hello.. What mutation do you have?

[hall2 in reply to Aneliv9]

Hello I'm CALR 2, would that make a difference?

[Aneliv9 in reply to hall2]

Sorry i don't know any details, but interferon works a little bit better i think in Jak 2 patients.. i asked you, just in case you were triple negative like me

[hall2 in reply to Aneliv9]

No not been diagnosed with that. It's ET.

[Susana7]

Hi, I have been on Pegasys for over 4 years, for PV. I started at 90mcg and experienced a quick decline in platelets from 1.5 million to the 500s. But then platelets reached a plateau in the 500s range and stayed there for a few months, oscillating up and down. I discussed with my haemo whether to increase the Peg dose or persist at 90mcg for a few more months. We opted for the latter option, to avoid more side effects and eventually, platelets slowly started on a downward trend towards the 400s. Today, I inject only 45mcg every 3 weeks and platelets hover around the 400 mark, still oscillating slightly up and down around that mark. So small variations up and down are normal. If I were you, I would just give it time. As for the Hb rise hopefully that was just temporary variation, but if it is still high in January, do discuss it with your haemo. All the best, Susana x

[hall2 in reply to Susana7]

Hi Thanks for your reply which I find encouraging!

[jon1972]

That's very strange the jump in HBG. I just looked back to a reference to see if there's any chance you could have PV, but it seems to not be a possibility with CALR mutation. Even if your appointment isn't until January shouldn't your hema still be reading all your labs each month?

[hall2 in reply to jon1972]

Hi no its been every two months and now they are stretching out to three! I'll see how it goes!

[lebowski42]

Yes, mine was going steadily down at 437x10 last month but this month jumped back up to 591. 90 mcg once week of interferon.

[hall2 in reply to lebowski42]

Thanks for your reply that's interesting.

[hunter5582]

Minor fluctuations in platelet levels are a normal part of how your body functions. Would not sweat such a minor single change. The HGB would be more of a concern. What was your hematocrit (HCT). Target is to stay below 45%. This is more important in managing PV.