Hello all,
I wanted to know from the PV MPNers , how is their experience with hydra , counts keep continue dropping with same dose or it gets stabilized for a long period after a while. Also I want to know if they continue taking aspirin if counts are in normal range or they stop it for a while.
For me it is irritating to keep on and off of hydra, count doesn't stay same for more than a week and hence monitoring/blood test every week or so.
We each respond differently to hydroxyurea (aka hydroxycarbamide)(HU).What others have experienced can tell you what might happen, but not what will happen for you.
The standard protocol for HU is to monitor CBC every two weeks until levels are stabilized. CMP and other labs will also be done to monitor for toxicity and other aspects of your treatment. Those for whom HU works will eventually find a dosage that is maintained until the disease status changes. HU alone does not always work for PV and many people also need phlebotomy to control erythrocytosis.
You will almost certainly need to continue to take aspirin even if blood cell numbers normalize. MPNs do not just affect how many blood cells there are, it affects how the blood cells behave. Hydroxyurea alone will not protect you from thrombosis. It may provide some protection from microvascular symptoms and from hemorrhage risk at higher platelet levels.
Hopefully others will weigh in on their experiences with HU so you can see a range of experiences.
Thankyou for sharing more information about aspirin, I used to think if counts are normal then there should not be any need of aspirin.
Hi. I’ve been on hydrea for many years with very little difficulty. It controls my counts well & ive been on the same dose for years. In the beginning I had to modify it a few times. Do you have a doctor who specializes in MPNS? If not I urge you to find one. It may be you need a different medication. Good luck. Katie
You’ve had some replied. I have ET it must be frustrating that you counts go up and down so good luck
Can someone explain what numbers the HU controls vs what numbers phlebotomy controls?I have PV and am finding this all so confusing!?
Thanks so much
In my case on 1000mg/day HU WBC, HCT, and PLT all went down in the first few weeks. HCT went too far down after a few months. My lesson has been to ask your Dr about compromise doses, for example not 500 or 1000/day but some days with less and some with more. This might be the best way to get good blood numbers and a balance of drug vs disease symptoms.
Your results probably also depend where you are on the the ET-PV spectrum. It can be for some a continuum as my Dr said. He also said that not everyone needs two baby aspirin per day, but at least one is needed even with normal counts. It's worth asking about that too.
ET/PV/MPN-U
Ruxolitinib for PV
Getting no results with pegasys
PV with MS
Low saturation with PV and Jakavi 20
