Query: E.T. Jak2 positive since 2018. On... - MPN Voice

MPN Voice

10,445 members14,398 posts

Query

Mcrg profile image
Mcrg
2 Replies

E.T. Jak2 positive since 2018. On Hydroxicarbamide since autumn 2019. Bloods every three months and platelets reduced and more or less stable. This last six months, HCT has crept from 0.44 where it usually stays to 0.46.Dr suggested increasing HU to two tablets, four times a week and one tablet three times a week. (Previously the other way around) or venesection, which in the past made me very tired. I am iron deficiency all of the time anyway.

Which do you think would be the better option?

Thanks.

Written by
Mcrg profile image
Mcrg
To view profiles and participate in discussions please or .
Read more about...
2 Replies
hunter5582 profile image
hunter5582

It is not clear why HCT is a concern at 46% if you have ET. It is within the normal range for a female and does not meet diagnostic criteria for PV (HCT>48% female). Keeping HCT below a certain level (HCT<45% male, HCT<42/43% female) is part of the treatment protocol for PV, but not for ET. Suggest reviewing your diagnosis/treatment goals and seeking an understanding of why it is an issue in your case.

If you already tolerate the current dose of HU, then increasing the weekly dose by one tab seems unlikely to cause a significant change in adverse effects. It would be a minimalistic intervention.

The purpose of venesection is to remove iron from the body to reduce erythropoiesis. It is supposed to make you more iron deficient without making you anemic. Chronic iron deficiency can have adverse effects like fatigue and loss of concentration.

If you want to drop the HCT level, then you would need to consider which risk you prefer to take - higher dose of HU vs venesection. There is not a clear answer to this. it is about your preferences.

All the best

Mcrg profile image
Mcrg in reply to hunter5582

Thanks for replying

You may also like...

Response to Vaccine Query

contacting my haematology team. I enclosed all three letters, MPN Voice, Blood Cancer UK and the...

First venesection - symptom query

All I had my first venesection for PV on 11th Oct. My HCT went down to 44.3 which was great....

newly diagnosed queries

shocked is an understatement, as platelets elevated slightly 460 & JAK2 positive results was a...

Gastroscopy Procedure Query

for the throat spray and will have to be sedated, which I understand carries greater risks but I am...

Blood Results Allele Burden Query