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

Posted by jak2mpnpositive @jak2mpnpositive, Mar 1, 2022

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.

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

ger63 | @ger63 | May 6, 2023

Hi, I was do with ET 3 years ago, + JAK2 via BM bx. I am cold intolerant and my knuckles turn purple in the cold. I am on Hydrea 500mg M-F with a low dose Asa. My lower legs have reddened and I am not sure if it’s med related or the disease process. Also my elbows get very red. Platelets are in check. No Lyme disease. I am glad to find this forum.

sregiani | @sregiani | Mar 31, 2023

In reply to @eileen11108 "Have you had a bone marrow biopsy to diagnose?" + (show)

Didn’t need to at this point. Blood tests confirmed JAK2 positive.

eileen11108 | @eileen11108 | Mar 31, 2023

In reply to @sregiani "My platelets have increased over the past few months, now seeing a hematologist who just confirmed..." + (show)

Have you had a bone marrow biopsy to diagnose?

Colleen Young, Connect Director | @colleenyoung | Mar 30, 2023

In reply to @sregiani "My platelets have increased over the past few months, now seeing a hematologist who just confirmed..." + (show)

Welcome, @sregiani. I moved your message to this existing discussion about essential thrombocythemia
- I have JAK2 ET and MPN: Anyone else have these symptoms? https://connect.mayoclinic.org/discussion/jak2-et-and-mpn-symptomscause/

I did this so that you can easily connect with other members with ET and the JAK2 mutation like @eileen11108 @annetterzam, @ttown @dancouclanel4 and many others.

You may also be interested in these related discussions:
- How does ET affect one’s vision? https://connect.mayoclinic.org/discussion/how-does-et-affect-ones-vision/
- Essential Thrombocythemia: Looking for information and support https://connect.mayoclinic.org/discussion/essential-thrombocythemia-1/

sregiani | @sregiani | Mar 29, 2023

My platelets have increased over the past few months, now seeing a hematologist who just confirmed JAK2 positive. He said “not cancer” , put me on an 81mg aspirin, has me on 2 nattokinese/day, and ordered more tests. CD8 shows mild immune issues.
Anyone on LDN or low dose naltrexone? He and my PCP said these are options along with other meds.
I had cataract surgery last summer and my right eye is giving me vision problems. I’d blamed the surgeon, but from what I’ve read, there are vision issues with ET, too.
This is frustrating. I’m an otherwise healthy almost 71 yo woman who eats almost exclusively organic and work out 3x/week. The hematologist said not to look it up, there’s scary stuff online (no kidding!)
Ideas and suggestions welcomed and appreciated!

annetterzam | @annetterzam | Dec 16, 2022

I was newly diagnosed with ET with the JAK2 mutation. I do have the red feet. I had no idea that this was a symptom. Just started the aspirin and HU this week. I am interested to see if these symptoms subside. Thanks for sharing!

bjmaynard | @bjmaynard | Dec 2, 2022

Good Morning.
I too was just diagnosed with ET. I have been experiencing Nausea, Headaches, exhaustion and itchy skin for about the last three years. Because of the elevated platelets they connected me with hematologist/oncology. I have been prescribed Hydrea, baby aspirin and nausea meds. Thought I was going crazy with all the symptoms but nothing to show, until October 2022. I am really hoping that the meds work. I will start being more motivated to exercise a little more daily. This is a great find and I love hearing about others stories. This is the first time I have ever joined a group like this. Thank You

wiggins32 | @wiggins32 | Dec 1, 2022

Sounds like a vascular issue is possible, and possibly blood clots. I had Delta variant of covid last summer and it was nearly death for me. A major symptom was I developed 9 blood clots in both legs, my arms, plus bilateral pulmonary embolism. It was very uncomfortable and a type of pain I had never had (like severe internal pressure in my calves and back of knees). I had purplish toes, leg swelling, and bulging veins. Mine was caused by covid, but I had to be under care of an Interventional Cardiologist for 6 months and taking blood thinner Eliquis. Honestly, I had no idea how seriously life threatening the situation was. I'm just grateful that the discoloration, painful swelling and throbbing in legs/feet that I went to ER. I'm fine now, but I still need to be watched carefully bcuz once a person has blood clots, they are always susceptible. Be safe and let us know how you are doing.

stevehurlburt | @stevehurlburt | Nov 30, 2022

Yes, I used to get purple toes! Tended to get worse when it was cooler…like 60 degrees, because I live in Phoenix!

Blood cancer could be contributing, but I went to a Vascular Surgeon and after a CT scan of my arteries, I had a 40% blockage. Normally they would wait to use a stent, but with my symptoms they put one in, And the put me on Xarelto=blood thinner! Fixed my issues, since it IS a circulation problem..exacerbated by the ET! Could be why they are confused…
Good luck!
Steve

eileen11108 | @eileen11108 | Nov 27, 2022

In reply to @ttown "I am 77 and was recently diagnosed with JAK2 ET in September of this year and..." + (show)

You seem extremely responsive to Hydroxyurea (HU) if your platelets came down in only ten days.

As to mouth sores my literature suggests gargling and rinsing your mouth with warm salt water. A tip I read on another website was to rinse and swallow water before taking the HU capsule,

I am 78 and was diagnosed with ET JAK2 in June 2022. When I first saw the hematologist my platelets were 621 but jumped quickly to 735. She started me on HU 500 mg daily. I started with headaches every day. I was taken off it for a few weeks and now on 500 mg every other day. Headaches are much less. I also get very tired by evening and my scalp/hair/skin/eyes are drier. I see her in a couple days so will see how that goes,

Good luck with your journey. Eileen