My name is Kristina and I'm 32 years old diagnosed with ET. I discovered that my platelets were high in 2007, but was diagnosed with ET few years later. First I was put on only Aspirin, then when my platelets were around million I was given Interferon Alfa which I was taking irregularly.
Now, this medicine is no longer available in my country and there is only hydroxyurea. If I take this, my hematologist said that I won't be able to get pregnant, we will have to stop the therapy at some point for my body to get cleaned from the hydroxyurea and then I could get pregnant.
I was wondering if anyone of you has went through this process and do you have any advice? Also, have you tried a certain diet that helps reducing the platelets? Have you had any side effects from the Hydroxyurea?
Regarding Covid 19 vaccination, there is only Astra Zeneca available in my country. Has anyone taken this vaccine? I'm also Jak2 positive. Thank you ❤️
Written by
Kristina-T
To view profiles and participate in discussions please or .
At age 32, hydroxyurea (HU) is a sub-optimal choice, particularly if you want to still have children. If you do take HU, then you will need to discontinue it for at least 6 months prior to conceiving a child. While on it, it is very important to avoid pregnancy. Regardless of what form of birth control you use, it should also include a condom as HU passes into vaginal secretions and your partner could be exposed to the toxic effects of HU.ethrombo.blogspot.com/2017/...
It is also important for you to wash your hands after taking the HU. Others in your household should wear gloves if they handle the bottle or the HU itself.
There are some other choices you might see if are available. Some people do use Anagrelide successfully. Others use Busulfan, though that is a third tier choice, Both of these choices have their own side effects that can be a problem. Jakafi is also an option, but is even more expensive than PEGylated Interferon.
I hope that PEGylated Interferon will become available where you live again. It likely is the best choice given your age and what you describe.
Note: Some people are able to tolerate platelets in the low 1 millions so long as they are not experiencing symptoms.
Hi there. As Hunter says a million (I’massuming what we’d refer to as 1000) though way out of normal range (300-400) isn’t alarming / unthinkable for a young person with ET. The usual guide is 1500 or age 65 before you need to start a conversation about drug intervention. But this is based on you having no other underlying conditions that may compromise your health. And it also depends on symptom burden and how you manage that. What also matters is the trend. Are your platelets stable around your current count or are they climbing? And what effect does coming off the meds have?
The important thing is, are you under the care of an MPN specialist? There are plenty on this Forum who will testify to having a successful pregnancy with an MPN. But you do need good advice and management. You definitely don’t want to take Hydroxy if you are pregnant or considering becoming pregnant. Busulfan I understand comes with risks and tends now to be used only in much older patients. A well balanced diet is obviously critical to maintaining general good health but is very much a (necessary) add on rather than a replacement for drugs to manage a high platelet count. Let us know how you get on.
Purely a technical side note. Ebot is correct. Our conventional reference to 1,000 actually = 1,000.000. If you look at your CBC it actually looks something like thisPLT 1,200 [10^3.uL] which means 1,200,000 platelets per microliter (1/millionth of a liter).
Reference Range [150-450] actually means 150,000 to 450,000 per microliter.
Over 450 = thrombocytosis
Under 150 = thrombocytopenia
Note: refence ranges vary by lab. One of mine actually says [163-369]. Can be VERY confusing.
hello Kristina-T, it is a shame that Interferon Alpha is no longer available in your country, as this would be the option for someone with ET who is planning a pregnancy. You will obviously have to discuss this with your haematologist to plan carefully your options for medication prior to and during pregnancy. Where do you live and is there absolutely no way at all that you can still have Interferon?
With regards to the Astra Zeneca vaccine, many people with MPNs have had it, I am sure that you will get some replies from people sharing their experience with you. Best wishes, Maz
Sharing my experience, maybe itll offer some help. I too am planning to get pregnant within the next year. Currently my platelets average 1100, I am calr positive, and on no treatment not even aspirin. I have very few symptoms. I have took it upon myself to create my care team and insist that they message one another through the health portal we are all linked to. The team consists of my hematologist who specializes in mpn, my maternal fetal medicine doctor who specializes in high risk pregnancy..absolutely find obe that takes you seriously (with elevated platelets makes me high risk), and my primary care physician. I'm also getting fibroid surgery in 6 weeks so looped in my surgeon for the time being. I have to coordinate but they all are great at discussing my care plan. It's very clear no treatment before pregnancy. Even when I do become pregnant, start baby aspirin only 8-10 weeks in due to critical fetal development at this stage. Depending on how platelets progress during pregnancy may need a daily shot. Furthermore post pregnancy when all women are 20x more likely to develop a blood clot, need a daily shot for 6 weeks post partum. I know it's a lot, but from all I've read, all whom I've talked to, ET should not rob us of the beauty of getting pregnant. Please use the search feature on here and you'll read many successful stories that may provide you comfort. Best wishes!
Sorry to hear that your options have been limited and that’s it’s causing you some worry. I’m also aiming for pregnancy this year so I totally understand how difficult it can feel to juggle risk/treatment decisions/desire for as “normal” a pregnancy as possible.
Here’s what I’ve learned from my preparation and care providers (MPN specialist, professor of haematology & midwife) some of it might be useful to you.
Risk assessment and treatment decisions should be based on the individual, an arbitrary platelet count/age measure doesn’t always tell the full story so it’s worth talking to an MPN specialist about what’s best for you, linking in with maternity services for high risk pregnancy and making sure that they’re communicating with each other.
Hydroxy and pregnancy obviously aren’t safe, some other therapies are. Interferon is safest if reduced platelet count is the aim.
Aspirin and clexane/LMWH are safe and effective in managing clotting risk. There’s a slightly higher risk of early miscarriage with some drugs, but lower risk of complications like pre eclampsia and clotting. Aspirin dose under 100mg is safe for baby in early pregnancy (high dose aspirin isn’t). Personally, I’m already on aspirin and interferon, and will be adding LMWH from day 1 of pregnancy.
Our pregnancies are classed as higher risk, but with the right team in place you’ll be closely monitored and well taken care of. Lots of women have had healthy babies only to find out afterwards that they have ET, so search for their stories on here, it’s really reassuring!
You have already been given some good information & advice regarding treatment & pregnancy. With regards to the AstraZeneca vaccine I have now had both my jabs while on Aspirin & Hydroxy and have been fine with no side effects. I asked my haematologist first for advice about any risks & he was all for me going ahead (I'm 60yrs & the benefits greatly outweigh the risks at my age). There have also been a lot of posts regarding the subject of covid vaccines on this forum.
I was on hydroxy through almost my entire pregnancy and now have a beautiful, healthy 16 month old son.
Just wanted to let people know that it IS possible, though it is not the preferred treatment during pregnancy. I was always under the impression that it was not safe and that my baby would not survive or would have severe birth defects. Maybe I just got lucky, but I still want to offer some hope to other women that only have the option of hydroxy.
I was absolutely terrified to start HU again when I was pregnant when I stopped responding to interferon. But I had no choice, my platelets were out of control.
Obviously do not do this without the guidance of your doctors.
Also a lot of people with ET find that their platelets naturally come down within normal ranges during pregnancy!
My inbox is always open if you would like to chat more
Oh wow that’s great to hear! Perfect example of how lived experience can be very different to what the literature tells us. Congrats on your baby boy ☺️
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
ET and Pregnancy 
changed from hydroxyurea to anargalide
Hydroxychloroquine & Hydroxyurea for Covid and & ET
Diarrhea with ET on hydroxyurea
Hydroxyurea and Anagrelide
