Pegasus on ET JAK+ Oct. 08 2021 update

[Sam2022]

Started on Pegasus 90umg/wk for 2 months, plate drops from 500-600 to 300. Used to take HU 500mg/day and dropped platelets from 900+ to 500ish. Switch from HU to PEG 2 months ago. No side-effect noticeable. However, WBC and RBC drop to 3.4k/ul and 4.13M/ul, which are slightly below normal range. Maybe need to wait another month to see the trend.

[hunter5582]

Sounds like a pretty good response. Some reduction in RBCs and WBCs is expected. Provided it is not too low it is all good. Neutrophils (antibacterial) and Lymphocytes (antiviral) are the WBCs to pay particular attention to. Note that it is Ok if they are a bit low, just no too low.

Glad to hear that you are not having any adverse effects with PEG. I am having the same experience. PEG is much easier to tolerate than HU (at least for me).

All the best.

[Sam2022 in reply to hunter5582]

Thanks, Hunter. Hope my RBCs and WBCS go back to normal over time. Wish you the best on the journey of PEG as well.

[DottyDaisy]

Hi Sam, that sounds like pretty good news for you.I'm 79 and Jak2+. Over nearly 2 years on no medication, my platelets hovered around 1000.

3 months ago I started Peg at 45 micrograms weekly. As I reported here, it was messing with my head. Not so much depression as total apathy and quite content to do nothing for several days after shot. I contacted Guy's and Professor Harrison told me to change to 45 mcg fortnightly (that's every 2 weeks in UK English).

Since then, no side effects and last Tuesday my platelets were down to 527 so they are anticipating I will be within normal range by the end of the year and therefore able to move forward with my hip replacement.

The other good thing is that there is little change to any of my key markers.

I'm definitely building up the impression, from people in this group and on several Facebook support groups, that with Peg low and slow is more effective in the long run, even for those whose systems take a long time to respond to Peg. You and I are lucky to have such immediate results.

[Sam2022 in reply to DottyDaisy]

Yes. Agree with you that we are luck that our body respond PEG well. All the best

[21Rosie]

Hi SamGreat results !

Like you I too started Peg 90mcg 8 weeks ago.

My platelets have dropped to 284 from 900.

This week my dosage was reduced to 45mcg.

Looking forward to seeing how this smaller dosage affects the bloods.

My WCC and neutrophils had dropped to slightly below normal but worryingly my ferritin has risen to over 900 - 3 times above normal.

Consultation with my haematologist next week will hopefully give me some clarity.

Hope you are able to reduce also . Obviously you are sensitive to Peg which is a wonderful thing.

Keep well,

Rosie

[Sam2022 in reply to 21Rosie]

Thanks for the suggestion. I am thinking either reduce the dosage to 45umg or extend the injection to 10 days from 1 week currently. I will see my doc next month and will update here