Anyone living with Essential Thrombocythemia with JAK2?

The first months after diagnosis are so hard.

We've all been through it -- and we're here for you.

For many of us, HU brings relief from ET symptoms like headache and fatigue. It can take a while to find your effective dose. Just know that you're on the way to better days ahead.

Welcome to Connect, @mariaalive. It sounds like you’re very proactive in taking care of your health and have two great doctors on your team! I hope you’ll find that your new friends in Connect are part of your care team as well! You jumped right into the perfect support group with other members who the same diagnosis of Essential Thrombocythemia, a condition where your body is producing too many platelets.

There’s no shortage of good conversations in the forum surrounding ET, side effects of the condition, the medications taken, and possible supplementation. I found a couple of discussions you might want to join. (More can be found by typing ET, Essential Thrombocythemia, JAK2 mutations, Hydroxyurea, etc., in the search box at the top of the page.)

Here are a few to get you started:

~What are most common side effects when starting HU (Hydroxyurea)?
https://connect.mayoclinic.org/discussion/hu-side-effects/
~Essential Thrombocythemia: Looking for information and support
https://connect.mayoclinic.org/discussion/essential-thrombocythemia-1/
~Essential Thrombocythemia (ET): foods, diet, nutrition?
https://connect.mayoclinic.org/discussion/essential-thrombocythemia-et-foods-diet-nutrition/
One note I wanted to mention is that there is some concern that products containing turmeric or curcumin may affect platelet function and clotting. This can potentially increase the risk of bleeding when combined with medications that have blood thinning effects such as Eliquis. You may want to check with your care team before continuing on with the curcumin, resveratrol or any other supplements that may affect clotting or interfere with your current medications.

Has your naturopathic oncologist prescribed the Curcumin and resveratrol?

I just turned 67, and was diagnosed with ET JAK2 a few months ago. Although I’m bummed it does answer questions I’ve had about symptoms like headaches, fatigue, dizzyness and even wierd eye symptoms. I started taking 81 mcg aspirin, but then was also having heart rate issues. So now I’m told I have mild atrial fibrillation and have been put on Eliquis and taken off of the aspirin. I do have to say that it helped some of my symptoms and is supposed to be the gold standard for preventing blood clots. And, finally, yesterday I started HU 100mg. Woke up this morning feeling bone achey and headache. I’m hoping those symptoms get better. I’ve also started seeing a naturopathic oncologist in addition to my MPN specialist. I’ve started taking quercetin and curcumin. I’m considering reveratrol. Has anybody else had similar conditions (cardiac and ET); and/or taking complementary medicines/supplements with good results? Thank you

I just turned 67, and was diagnosed with ET JAK2 a few months ago. Although I’m bummed it does answer questions I’ve had about symptoms like headaches, fatigue, dizzyness and even wierd eye symptoms. I started taking 81 mcg aspirin, but then was also having heart rate issues. So now I’m told I have mild atrial fibrillation and have been put on Eliquis and taken off of the aspirin. I do have to say that it helped some of my symptoms and is supposed to be the gold standard for preventing blood clots. And, finally, yesterday I started HU 100mg. Woke up this morning feeling bone achey and headache. I’m hoping those symptoms get better. I’ve also started seeing a naturopathic oncologist in addition to my MPN specialist. I’ve started taking quercetin and curcumin. I’m considering reveratrol. Has anybody else had similar conditions (cardiac and ET); and/or taking complementary medicines/supplements with good results? Thank you

64 year old black female just wondering were this is coming from. I contribute this to having the covid vaccination as my blood work was always good until I took the shoot. I will start taking hydrea 500 this week. A lot of unknown information. Can I still work, will I live a normal life i am active had plans to retire and travel in the next 2 years just so afraid and mad.

I was officially diagnosed with ET this spring and tested positive for JAK2. 53 years old, I am living in Japan, and on .5 mg Anagrelide three times a day (1.5 mg total). I started out at 1 mg, but my platelet count kept gradually climbing. It went over 700,000 in November, and then my dose was increased. I'll find out in four days how it's working. Last spring I had rolling migraines and odd neck and eye pains, but they completely stopped within two weeks of being prescribed 100 mg of aspirin daily. Until recently, I didn't feel anything out of the ordinary, but since the cold weather hit, I've been getting tingles in my hands and feet from time to time. I'm also a lot more fatigued, but I also have Crohn's and that could be a big reason. I try to walk two miles a day if I can, and about once every half an hour or so, I do leg lifts, stretches, or squats to keep things circulating. The hospital found a few clots in my lungs, so I am also taking 10 mg of Eliquis per day. It's been a roller coaster since last January when I started getting migraines and other pains. At least I can say I'm not hurting as much as I was. Looking forward to hopefully getting things under control in the near future.

I was officially diagnosed with ET this spring and tested positive for JAK2. 53 years old, I am living in Japan, and on .5 mg Anagrelide three times a day (1.5 mg total). I started out at 1 mg, but my platelet count kept gradually climbing. It went over 700,000 in November, and then my dose was increased. I'll find out in four days how it's working. Last spring I had rolling migraines and odd neck and eye pains, but they completely stopped within two weeks of being prescribed 100 mg of aspirin daily. Until recently, I didn't feel anything out of the ordinary, but since the cold weather hit, I've been getting tingles in my hands and feet from time to time. I'm also a lot more fatigued, but I also have Crohn's and that could be a big reason. I try to walk two miles a day if I can, and about once every half an hour or so, I do leg lifts, stretches, or squats to keep things circulating. The hospital found a few clots in my lungs, so I am also taking 10 mg of Eliquis per day. It's been a roller coaster since last January when I started getting migraines and other pains. At least I can say I'm not hurting as much as I was. Looking forward to hopefully getting things under control in the near future.

I was officially diagnosed with ET this spring and tested positive for JAK2. 53 years old, I am living in Japan, and on .5 mg Anagrelide three times a day (1.5 mg total). I started out at 1 mg, but my platelet count kept gradually climbing. It went over 700,000 in November, and then my dose was increased. I'll find out in four days how it's working. Last spring I had rolling migraines and odd neck and eye pains, but they completely stopped within two weeks of being prescribed 100 mg of aspirin daily. Until recently, I didn't feel anything out of the ordinary, but since the cold weather hit, I've been getting tingles in my hands and feet from time to time. I'm also a lot more fatigued, but I also have Crohn's and that could be a big reason. I try to walk two miles a day if I can, and about once every half an hour or so, I do leg lifts, stretches, or squats to keep things circulating. The hospital found a few clots in my lungs, so I am also taking 10 mg of Eliquis per day. It's been a roller coaster since last January when I started getting migraines and other pains. At least I can say I'm not hurting as much as I was. Looking forward to hopefully getting things under control in the near future.