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
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.)
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
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.)
Thank you for all of this great information. Yes both docs, and also the cardiologist are aware of the supplements. They are doing weekly blood counts to make sure all is helping. Yes the naturopathic oncologist has prescribed the curcumin and the quercetin. He is suggesting the resveretrol and well decide that next week. So much to think about. 🙏🏼
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.
I was diagnosed with the jac2 mutation in 2016. I take Hydroxy Urea to control platelets. Worst side effect if fatigue. Hemoglobin hovers between 9 and 10
I was diagnosed with the jac2 mutation in 2016. I take Hydroxy Urea to control platelets. Worst side effect if fatigue. Hemoglobin hovers between 9 and 10
Welcome to Connect @redrider48 I’ve heard from others that fatigue is often a side effect from the Hydroxyurea. A number of members have mentioned taking the medication at night and that seems to help with avoiding daytime tiredness.
Here a link to one of the discussions about HU that might be helpful for you.
Welcome to Connect @redrider48 I’ve heard from others that fatigue is often a side effect from the Hydroxyurea. A number of members have mentioned taking the medication at night and that seems to help with avoiding daytime tiredness.
Here a link to one of the discussions about HU that might be helpful for you.
I began Hydrea treatment 10/1/2024. Already losing my hair and having mouth sore issues. I was taking the Hydrea before bed but because I don’t eat before sleep it bothered my stomach. Now I take it at 9:00 am after having a little something for breakfast. This helped.
I began Hydrea treatment 10/1/2024. Already losing my hair and having mouth sore issues. I was taking the Hydrea before bed but because I don’t eat before sleep it bothered my stomach. Now I take it at 9:00 am after having a little something for breakfast. This helped.
Welcome to Connect, @critterlover. What a lovely @name! We’re friends already. ☺️
Hydrea can occasionally have effects such as hair loss and mouth sores. Sometimes, from what other members have said, having a dosage change may help alleviate some of the symptoms. You’re early in your Hydrea treatment so this may take a little time to balance out.
Thank you for sharing your experience with what has worked for you to avoid tummy issues.
If you haven’t seen this discussion already, here is a link to some good conversations about:
~What are most common side effects when starting HU (Hydroxyurea)? https://connect.mayoclinic.org/discussion/hu-side-effects/
Were you having symptoms which led to your discovery of ET?
Welcome to Connect, @critterlover. What a lovely @name! We’re friends already. ☺️
Hydrea can occasionally have effects such as hair loss and mouth sores. Sometimes, from what other members have said, having a dosage change may help alleviate some of the symptoms. You’re early in your Hydrea treatment so this may take a little time to balance out.
Thank you for sharing your experience with what has worked for you to avoid tummy issues.
If you haven’t seen this discussion already, here is a link to some good conversations about:
~What are most common side effects when starting HU (Hydroxyurea)? https://connect.mayoclinic.org/discussion/hu-side-effects/
Were you having symptoms which led to your discovery of ET?
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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?
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4 ReactionsThe 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.
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Hug
4 ReactionsThank you for all of this great information. Yes both docs, and also the cardiologist are aware of the supplements. They are doing weekly blood counts to make sure all is helping. Yes the naturopathic oncologist has prescribed the curcumin and the quercetin. He is suggesting the resveretrol and well decide that next week. So much to think about. 🙏🏼
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3 ReactionsThank you. This is much appreciated.
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2 ReactionsI was diagnosed with the jac2 mutation in 2016. I take Hydroxy Urea to control platelets. Worst side effect if fatigue. Hemoglobin hovers between 9 and 10
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Helpful -
Hug
2 ReactionsWelcome to Connect @redrider48 I’ve heard from others that fatigue is often a side effect from the Hydroxyurea. A number of members have mentioned taking the medication at night and that seems to help with avoiding daytime tiredness.
Here a link to one of the discussions about HU that might be helpful for you.
~What are most common side effects when starting HU (Hydroxyurea)?
https://connect.mayoclinic.org/discussion/hu-side-effects/
What’s your daily dosage?
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Hug
3 ReactionsI began Hydrea treatment 10/1/2024. Already losing my hair and having mouth sore issues. I was taking the Hydrea before bed but because I don’t eat before sleep it bothered my stomach. Now I take it at 9:00 am after having a little something for breakfast. This helped.
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Like -
Helpful -
Hug
2 ReactionsWelcome to Connect, @critterlover. What a lovely @name! We’re friends already. ☺️
Hydrea can occasionally have effects such as hair loss and mouth sores. Sometimes, from what other members have said, having a dosage change may help alleviate some of the symptoms. You’re early in your Hydrea treatment so this may take a little time to balance out.
Thank you for sharing your experience with what has worked for you to avoid tummy issues.
If you haven’t seen this discussion already, here is a link to some good conversations about:
~What are most common side effects when starting HU (Hydroxyurea)?
https://connect.mayoclinic.org/discussion/hu-side-effects/
Were you having symptoms which led to your discovery of ET?
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Hug
4 ReactionsThank you for your response. I have sent a text to my hematologist regarding a possible lower dose of the Hydrea. I’m hopeful 😊
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3 ReactionsHow have your blood numbers been looking? Have you had a good response in lowering your platelets while being on the HU?
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2 Reactions