Pregnancy and jak2 Et

[Catherine04]

Hello i am 28 yrs old and I just found out I am pregnant. I am diagnosed with jak2 essential thrombcytosis. Anyone have any successful stories with this diagnosis and pregnancy? I need motivation.

[CommonDaisy]

Hi Catherine,

Congratulations on your pregnancy!!

I am also 28 years old with essential thrombocytosis. I am currently being treated with Peg Interferon to lower my platelets which is safe to use during pregnancy.

My husband and I have just been given the okay to start trying last month, so hopefully I will be pregnant soon! Fingers crossed!

Though it is rare to have ET with pregnancy, there a many success stories, even just on this forum.

I have also spoken with ‘buddies’ through this forum who have had successful pregnancies 🤗🤗

If you ever what to chat, feel free to send me a message.

How high are your platelets and will you be treated through your pregnancy?

[Mazcd Partner MPNVoice]

Hi Catherine, congratulations to you, this information on our website might help you

mpnvoice.org.uk/living-with...

[RedYellow]

Yes! I had some issues initially but they finally diagnosed my ET. My platelets were 1500 when I got pregnant and I started Pegasys straight away. I took aspirin and blood thinners through the pregnancy. I was monitored a lot but actually it was fairly uneventful. I now have a happy, healthy, and slightly crazy two year old. I'm happy to answer any questions at all you might have.

[Glagirl]

Yes I have had an ET diagnosis since 1994 and now have a 14 year old and a 10 year old.

My pregnancies were great and my platelets went down to 250 from 700 due to dilution from extra blood (so I was told!). I had light heparin injections before delivery to prevent any clotting issues, but apart from that was drug free.

Although I have been living med free since 1997. (Platelets sit around 600/700)

Congratulations on your pregnancy and enjoy every minute x

[Spam1979]

Hi Catherine, congratulations!

I was diagnosed with JAK2+ ET back in 2004 and now have two happy healthy boys aged 12 and 8. With my first pregnancy I took interferon injections for a few months before trying to conceive and then only aspirin throughout. With my second pregnancy they didn’t bother with interferon and I was prescribed heparin injections right through from try to conceive to throughout my pregnancy. My platelet counts dropped to around normal range with both pregnancies which they said they expected. I had two very enjoyable straightforward pregnancies with no problems at all. They scanned me monthly which was great and I wasn’t allowed to go past my due date (I was induced both times). Please try not to worry and enjoy every minute x

[Catherine04 in reply to Spam1979]

That’s great to know. Thank you so much for responding :). Did you have natural birth?

[Spam1979 in reply to Catherine04]

Yes I did both times 🙂

[lynxfluff]

Congratulations!! I hope you have a happy and healthy pregnancy.

I’m 32, diagnosed with PV (JAK2, TET2, ASXL1 +) almost two years ago. I actually found out because of the blood draw at my first OB appointment. I’d had serious headaches, visual and mental fuzziness, and more recently horrible itching for some time before, but had been misdiagnosed.

It was weird, but like Glagirl, I also saw a reduction in cell numbers (not just platelets, but all of them). And even though I was taking a daily baby aspirin as my only MPN-related medicine, the itching totally subsided. Thanks, baby!!

The plan was to stop aspirin a week before my due date. I had a c-section, and for the next six weeks after delivery, I had heparin shots once daily to prevent clots. Once they were done, I went back to aspirin. They were not concerned with either substance affecting breastmilk.

My doctor at the time wanted to wait for a bit to let my blood go back up to a not pregnant baseline, since we didn’t actually know what mine was. That sucked. It shot up quickly, and I was immediately itchy/experiencing all the symptoms again. A recommended second aspirin daily didn’t even remotely touch it. When I wasn’t busy with the kiddo, I was too itchy to sleep! D:

I ended up swapping from the hematologist associated with my MFM practice to one at MD Anderson. It was a great decision. I’m on Pegasys now, not itchy, and feeling much better.

You’re going to do great. Be your own best advocate; make sure your hematologist knows how you’re feeling; and make sure your OB and post-delivery hospital team are kept in the loop on your MPN. Good luck, mama!