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I have JAK2 ET and MPN: Anyone else have these symptoms?
Hi all,
I've suffered for many years with this MPN disorder, but it seems not many others have the same symptoms, so I'l posting this to see if anyone else has similar symptoms.
First of all, it's important to note that I had lyme disease undiagnosed for 4 years. Right around the time I started to experience symptoms from Lyme disease, my platelets shot up. With that said, I am certain that this is when the JAK2 was triggered. However, it took my another 9 years to be diagnosed with JAK2, ET MPN. My platelets are currently around 890. I am 40 years old. With a recent pregnancy, my platelets went down into normal range and I felt AMAZING!
Symptoms that I experience: Very red (almost purple) feet when sitting too long. This is not comfortable.
Upon sitting too long at a desk, typically in front of a computer, if it's consistent for several weeks, I start to feel as though I am going to die. There is no other way to explain it. It's as if my blood is stagnet. It's VERY uncomfortable. The only way for me to feel better is with exercise and continued movement.
I've had a hematologist tell me my symptoms aren't related to my MPN and I've had one tell me they are. It's very frustrating.
Does anyone else have any similar symptoms?
Thank you.
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Well, I’m 77 so pregnancy isn’t an option! But, it made me chuckle.
I was diagnosed with PV/JAk2 about 5 years ago. Take 1000mg of HU daily.
I’m sure many of my symptoms/complaints have as much to do with my age as PV. But, I am relatively stable so much so I now go for blood test every 60 days. When my hematocrit reaches 43 I can feel it and know I need a phlebotomy (despite having a couple of nurses tell me I didn’t!)
I’ve also taken thyroid med for at least 30 years and it has rarely fluctuated. But, fatigue being the worst side effect of HU, I didn’t realize my thyroid med needed adjustment, I was searching for a GP and when I finally found one, she ordered TSH and my med was adjusted. Well, it was like someone flipped a switch! I actually had the energy and desire to get some things done!
So, I’m just throwing that possibility out there and it’s easily checked.
And, having despised exercise since I was a kid (always preferring a quiet space and a good book) I hate that it actually helps overall and, specifically, with the fatigue.
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2 ReactionsHonestly 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?
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1 ReactionI 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.
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?
@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?
@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?
@loribmt Are there any other crucial things that you can advise beside traditional meds?
@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.