I have JAK2 ET and MPN: Anyone else have these symptoms?

@birgitr With your lab results showing a platelet decrease already, that should be an encouraging indication that the HU is working well to meet the goal of 350. Like I mentioned, often doctors will tweak dosages higher or lower to get to a balance of ‘just right’ and not taking more than necessary. So hang in there!

You wanted to know my story…well, I’m one of the mentors in the Blood cancer & disorders support group. Though I didn’t have ET, over the last 7 years, my extensive experience with a very aggressive form of leukemia and the subsequent bone marrow transplant fueled my deep interest in blood cancers. I know what it’s like to get hit out of the blue with a blood/bone marrow related issue! At the time, I didn’t know a soul who’d gone through a similar situation. It’s scary to feel alone. So I’m here sharing information that I’ve gleaned along the way to support others and to offer hope.

What do I make out of this? From my experience with other members diagnosed with ET, it has become my understating that treatment with HU is first-line treatment, manages the condition effectively, generally with few side effects. Some instances, if HU isn’t sufficient, there are other drugs available working through different biological mechanisms. From conversations with others in Connect, most people being treated for their ET go on to live productive lives.

I know this is all so new to you and no one likes the prospect of taking meds long term. If it helps, look at this now as more of a chronic condition such as high blood pressure that you can take meds for and go about your life. Your hematologist will monitor you through routine blood work and if anything changes over the years, then there may be a change in treatment as well. It’s good to learn about your condition but try not to let it define you. ☺️

@birgitr to cardio work out 3 days a week and eat as a diabetic with my wife. Have never ate fast foods per se but occasionally wander. Worked hard and played hard prior to diagnosis and have kept up to the best I can, bad knees and back hinder my physical abilities..
I’m of Italian descent so you can imagine my dietary habits…

@emd64 I really admire your approach to stay calm and focus on consistently taking your meds👍. And have you ever thought about alternative ways to battle the desease? Eating habits or specific sportactivities or is this naive to think that there is a possibility to influence the clone?

@birgitr no to interferon as long as the HU is working I’m staying with it, I learned to get over the diagnosis very easily as my father had PV another MPN and first dealt with his issues, unfortunately he also had Bone Cancer and left us too early. Although I was assured I was not at risk 10 years later I developed my MPN, Drs say it’s not hereditary but is genetically related.

@loribmt Are there any other crucial things that you can advise beside traditional meds?

@loribmt I am so grateful for your support thank you 🙏 so much for sharing those valuable and educational information . I have been taking HU for 6 weeks now and the numbers have dropped to 490 now my doctor has increased the dose to 10 times a week to reach hopefully 350. What is your personal story and what do you make out of this?

@emd64 Thank you so for sharing obviously the meds particularly HU are working properly. Have you ever been thinking about Interfereon? And how are you dealing with the desease psychologically?

Hi @birgitr. Welcome to Mayo Connect. There are several medications which can be used to help people with excess platelet production to keep it under control. HU is one of the frontline medications, been used for decades and fairly well tolerated. Sometimes it can take a little tweaking to find the sweet spot between efficacy and tolerance.
Labs results will show how well the medication is working for you and your doctor will adjust the meds accordingly. If HU isn’t working well your doctor may suggest another option such as interferon based meds.

Since you’re new to the ET diagnosis, it can be helpful to learn a little more about what this blood condition is all about. Here are a couple of links to some informational articles on Essential Thrombocythemia and also on the JAK2 mutation and how that impacts blood cell development and why it’s important to treat it even if you don’t have any noticeable symptoms.
From Very Well Health:
Essential Thrombocythemia
https://www.verywellhealth.com/essential-thrombocythemia-2860907
~What is a JAK2 mutation?
https://www.verywellhealth.com/jak2-mutation-5217909
How long have you been taking the HU? Have labs shown an improvement in the platelet levels?

I too have ET with Jak2, diagnosed in Oct 2022 at age 64. My platlet count hit in the 900’s, started with HU 500 one each day plus a 81 mg ASA for a month with a slight improvement showing with weekly blood tests. After 1 month moved to 2 pills every other day and weekly checks showed good improvement with a couple of Phlebotomy’s thrown in to bring the Hematocrit’s down.
I Tailored the meds to an ASA every morning with an HU 500 on Mon, Tues, Thurs, Fri and an HU 500 every night so 11 per week. I take my medication at 8:00am and 8:00pm each day, a 31 day am/pm pill organizer is a must for me as I take other meds as well.
My current platlet count is a steady 250/275 and Hematocrit count at 420.

Honestly I have no symptoms yet. However I’ve been diagnosed with Et Jak 2 recently. My plats are 675 and I am taking HU 500 mg 10 times a week and ASS every day. I am 60 years old. Are there anyone in a similar situation and what do you think about interferon?