Update - Good News on Peg: Been on a steady dose... - MPN Voice

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Update - Good News on Peg

Solyesh profile image
9 Replies

Been on a steady dose of Peg (90mcg x 2 weeks) now for about a year - it took a while to get here as I started out on 2x that dose and was doing great until liver got sensitive. Went off or 2 months (and all readings jumped immediately) and went back on gradually at 2-3 week intervals. Have been patient as has my MPN specialist. Just did an interim CBC/liver panel a couple of days ago and platelets now at 488...still a little outside "normal" range (450) but the best I have seen in a decade and well within my MPN doctor tolerance of 600 (I am ET Jak2+).

My WBC is right in the middle of normal which for me feels low :-) as prior to cytoreduction it was always elevated (11.0 - 14.0). Good news also on liver as it continues to behave. All readings WNL with the exception of ALT which is right above the upper limit (almost within range).

Since I am tolerating Peg well (feel a little flu-ish second day after injection) - we are going to leave dosage where it is for now. See my MPN specialist again in August and we'll see where things stand. I am advocating for maintaining the current dose (assuming everything stays ok) until we check my allele burden again. Current plan is to probably check by end of year - after 18 months at steady dose. Hoping that the positive response on blood work translates into a reduction of allele burden (which was quite high for ET).

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Solyesh profile image
Solyesh
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9 Replies
Lillysue19850705 profile image
Lillysue19850705

Glad Peg works well for you!

Hopetohelp profile image
Hopetohelp

Great news. Thanks for letting us know how well you are doing. Encouraging stuff for us all

hunter5582 profile image
hunter5582

Good news! Sounds like a good plan as well.

Franko21 profile image
Franko21

That’s good to hear , thanks for sharing , for those on the same path as you it gives us hope . Good luck on your journey .

Ovidess profile image
Ovidess

So helpful to hear your story!

mhos61 profile image
mhos61

Great news. You must be delighted!

T1960 profile image
T1960

Well done. You sound so positive. Fab news

Island-Lady profile image
Island-Lady

so very happy for you, and it makes me hopeful! May you continue to have wonderful results!

Mishie14 profile image
Mishie14

Congratulations and thank you very much for sharing details. Your good news is inspiring as I am hopefully going down the same path with peg though only 3 months into it. Good job taking control of the situation. Stay safe!

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