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 started HU in February and my hair soon started falling out in handfuls when I combed it. In July I started taking amino acids for something else, but soon noticed that my hair was no longer falling out, and it was growing back in. Still growing in nice and thick. I’m taking Essential Amino Acids, brand is Double Wood. Maybe it’ll work for 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
Hi, MariaAlive! I also see a naturopath oncologist and an MPN heme doc. My PCP is a functional medicine doc, so all 3 work together and are in agreement on my care.
72 y/o female, ET wJAK2 for 2 years holding in the high 600s only taking 81 mg aspirin, no HU.
I’ve been on 4-hour time release Resveratrol by Reserveage for probably close to 10 years now.
They’ve said not to use a cheaper brand because of fillers. Also on quercetin and curcumin, Vit D3 w/K2, Vit C, and a B-complex w/Biotin.
Work w/your Docs, talk about your average diet and exercise, and how often you are outside getting fresh air and sunshine. I’m in MI where skies are grey all winter long. Without supplemental Vit D, my levels easily fall below 35. To stay close to 80, I need to take 10,000 IU/day. But here’s the thing, work with your Docs: If I go to Florida for weeks at a time and I’m outdoors every day I stop taking the vitamin D or my levels can approach 100 or more. Delicate balance!
It takes a while to figure it all out. Supplements work slowly, so be patient with your Docs and yourself. This is something we LIVE with. It’s going to be ok!
Your doctor will be watching your blood results for positive trends…in this case, getting your platelets down to a ‘normal’ level. It’s encouraging that you’re seeing a difference already. Make sure you talk to your doctor about the symptoms you’re having and even have a list of questions you’d like to ask. Often doctors will adjust the dosage accordingly.
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?
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 @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 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.
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
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I started HU in February and my hair soon started falling out in handfuls when I combed it. In July I started taking amino acids for something else, but soon noticed that my hair was no longer falling out, and it was growing back in. Still growing in nice and thick. I’m taking Essential Amino Acids, brand is Double Wood. Maybe it’ll work for you.
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Like -
Helpful -
Hug
2 ReactionsHi, MariaAlive! I also see a naturopath oncologist and an MPN heme doc. My PCP is a functional medicine doc, so all 3 work together and are in agreement on my care.
72 y/o female, ET wJAK2 for 2 years holding in the high 600s only taking 81 mg aspirin, no HU.
I’ve been on 4-hour time release Resveratrol by Reserveage for probably close to 10 years now.
They’ve said not to use a cheaper brand because of fillers. Also on quercetin and curcumin, Vit D3 w/K2, Vit C, and a B-complex w/Biotin.
Work w/your Docs, talk about your average diet and exercise, and how often you are outside getting fresh air and sunshine. I’m in MI where skies are grey all winter long. Without supplemental Vit D, my levels easily fall below 35. To stay close to 80, I need to take 10,000 IU/day. But here’s the thing, work with your Docs: If I go to Florida for weeks at a time and I’m outdoors every day I stop taking the vitamin D or my levels can approach 100 or more. Delicate balance!
It takes a while to figure it all out. Supplements work slowly, so be patient with your Docs and yourself. This is something we LIVE with. It’s going to be ok!
Blessings for a healthy new year!
Sherry
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4 ReactionsYour doctor will be watching your blood results for positive trends…in this case, getting your platelets down to a ‘normal’ level. It’s encouraging that you’re seeing a difference already. Make sure you talk to your doctor about the symptoms you’re having and even have a list of questions you’d like to ask. Often doctors will adjust the dosage accordingly.
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5 ReactionsGreat lowering on platelets. From 697 to 617. Maybe there’s room to slow it down a bit to help my side affects?
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2 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 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 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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Like -
Helpful -
Hug
4 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.
-
Like -
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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Helpful -
Hug
3 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 Reactions