MPN PV @ Hydra

[neela2020]

Is there any time after months of hydra when you need to stop the medicine for sometime or need adjustment , to allow blood counts to rise again a bit and to start the cycle . Means off / on or it is same dose for years ? Please share your Individual experiences .

[Mazcd Partner MPNVoice]

Hi Neela, the dose may go up or down depending on your blood counts and any symptoms or side effects you may have, this is why you will have them checked on a regular basis, and adjustments may be made with either an increase or decrease in the dose. Once your haematologist is satisfied with your blood counts your dose will most likely stay the same, but it all depends on what your blood counts are doing and how you are feeling. Some people stay on the same dose for months/years and others have adjustments made, it is all individual to each person. The aim is to control your blood counts and symptoms. Best wishes, Maz

[neela2020 in reply to Mazcd]

Thanks Mazcd . Yes ideally counts should be stable . But as I experienced since two years from my diagnosis there comes a time when the dose is stopped for a week or decreased. Otherwise the count ( mostly RBCs) goes too low. Is it normal ? I mean why should count keep falling ?I just want to understand how it works for all.

[hunter5582]

Answering your question means understanding how HU works. HU interferes with DNA activity in various types cells that have higher levels of DNA activity. This includes hemopoietic stem cells (HSC). HU is a cytotoxin that impairs all HSC activity, both the mutated and wild-type (normal) HSCs. Thus, HU decreases all hematopoiesis. HU decreases RBCs just like it decreases platelets. That is why it is used to treat PV too.

We each respond differently to HU and the other meds used to treat MPNs. Some respond differently. Some respond well. Some are refractory to HU. Some, myself included, cannot tolerate HU. Some of us respond much better to the other options. I did not tolerate HU and it did not adequately control the erythrocytosis. I have responded really well to Pegasys and have not had any adverse effects. Others have a different experience with PEG.

All the best.