Platelets rise again: Hi all I've been on Pegasys... - MPN Voice

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Platelets rise again

hall2 profile image
13 Replies

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.

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hall2
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13 Replies
Tico profile image
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 profile image
hall2 in reply toTico

Hi thanks for your reply, I might do that.

Aneliv9 profile image
Aneliv9

Hello.. What mutation do you have?

hall2 profile image
hall2 in reply toAneliv9

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

Aneliv9 profile image
Aneliv9 in reply tohall2

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 profile image
hall2 in reply toAneliv9

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

Susana7 profile image
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 profile image
hall2 in reply toSusana7

Hi Thanks for your reply which I find encouraging!

jon1972 profile image
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 profile image
hall2 in reply tojon1972

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

lebowski42 profile image
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 profile image
hall2 in reply tolebowski42

Thanks for your reply that's interesting.

hunter5582 profile image
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.

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