Only if a physician has ET does she or he know what it means. So rely on your hematologist for blood counts, but come here to learn how to live with this.
Some days are good and some are not. It's tough! And it's a safe bet that no one you know has ever even heard of ET, so this can really make you feel isolated.
Here's my experience with ET and HU. I was started at a low dose. I'm grateful to my oncologist for that, because it's probably why I've never had any side effects.
It took 8 months for HU to stop my platelet count from climbing; more than 2 years to bring the count down into the normal range.
Waiting for that to happen was frustrating. But long before the count was normal, I was getting relief from headaches. I felt much stronger too. That's what HU has done for me.
We each experience ET and HU differently. I tell you my story to give you hope!
Only if a physician has ET does she or he know what it means. So rely on your hematologist for blood counts, but come here to learn how to live with this.
Some days are good and some are not. It's tough! And it's a safe bet that no one you know has ever even heard of ET, so this can really make you feel isolated.
Here's my experience with ET and HU. I was started at a low dose. I'm grateful to my oncologist for that, because it's probably why I've never had any side effects.
It took 8 months for HU to stop my platelet count from climbing; more than 2 years to bring the count down into the normal range.
Waiting for that to happen was frustrating. But long before the count was normal, I was getting relief from headaches. I felt much stronger too. That's what HU has done for me.
We each experience ET and HU differently. I tell you my story to give you hope!
@janemc
Thank you
Frustration is key
The fog is hard also. I’m a factual person and the way hematologist takes you take HU and Aspirin and live a normal life. I try but I’m not the same I have a good day and think it’s over and then the next day it’s back. I thank you for the feed back. I guess I want to hear that the things I’m feeling is just part of ET and taking ET. Then I can get through it better and deal with my symptoms and take it easy when I need too. Does it get better the longer your on HU. It’s been may be 5 months I believe
Hello, Annette! With ET, way too much of our energy is mis-directed towards platelet production. It's hard to do anything when you are so tired.
Many of us have sensitivity to cold. I've learned to wear extra layers of clothing, taking special care to keep my chest (heart) warm.
It's believed that ET's headaches come from our too-thick, platelet-heavy blood trying to pass through the tiny vessels in our heads. The headaches can be awful.
With your platelet count down to 385, you are doing great! I hope that you -- like me -- will have relief from ET's exhaustion and headaches as HU continues to work for you.
@janemc
Thank you
Frustration is key
The fog is hard also. I’m a factual person and the way hematologist takes you take HU and Aspirin and live a normal life. I try but I’m not the same I have a good day and think it’s over and then the next day it’s back. I thank you for the feed back. I guess I want to hear that the things I’m feeling is just part of ET and taking ET. Then I can get through it better and deal with my symptoms and take it easy when I need too. Does it get better the longer your on HU. It’s been may be 5 months I believe
Hi! Welcome to the group! I also have ET with positive JAK2. When I was first diagnosed they had not discovered the JAK2 enzyme yet. So in those days, they tested you for everything and if you were negative for all other disorders and had high platelets, you were told you had ET. All of us take different amounts of Hydroxyuria (hydrea). My dose is 500 mg, five days a week. This keeps my platelet count in the 400,000. I also take a daily baby aspirin. I was first diagnosed at age 45. Started Hydroxyuria at age 50. I’m 69 years now and have been on this med for 19 years. Other than feeling a bit tired, I am very fortunate and do not have any problems. Keep up the positive vibes! We are so lucky there is treatment to lower our platelet count!
The ET diagnosis can be scary. Even though my blood pressure is normal at home, it goes off the chart when I am getting a blood test ...white coat syndrome?
I have been on daily aspirin and 500 mg hydroxyurea daily since May 2025. I will be 72 in March.
This past January 5th, for the first time, my platelet count and other blood related measurements were in the normal range from a high initially of 575.
Each day is a gift and I thank God I have had no side effects.
Praying for everyone facing ET and for guidance for the doctors who treat us!
@leene808
Hello my name is Annette
I’ve been diagnosed with Jak 2 and ET. The fatigue is for really. I have to live a normal life and still feel this way. It comes and goes and I can be myself. Then just drop with tiredness. Then I get this heavy head. Really hot a head ache pressure head ache. Do you get confused when you have to multitask. Or does loud sounds and touch amplify.
I’m cold all the time.
It’s hard I have to deal with all these things and still work and live a normal life. Not knowing if this is normal. I’m on 325 mg of aspirin 1 dx. 500 Hydrea 2xdx am pm.
My palettes came down to 385 that’s good but still feel good days bad days.
The dr smile and move on.
I get it I am one that needs to know. If this is my new way of life. Drs say everybody body is different Ugh Frustrating Annette
Hello, Annette! With ET, way too much of our energy is mis-directed towards platelet production. It's hard to do anything when you are so tired.
Many of us have sensitivity to cold. I've learned to wear extra layers of clothing, taking special care to keep my chest (heart) warm.
It's believed that ET's headaches come from our too-thick, platelet-heavy blood trying to pass through the tiny vessels in our heads. The headaches can be awful.
With your platelet count down to 385, you are doing great! I hope that you -- like me -- will have relief from ET's exhaustion and headaches as HU continues to work for you.
I am living with both. On 325 aspirin 1 x day and 500 mg Hydrea 2 x day. I am only 55 yrs old. And not dealing with this well. I want to be me again. Tired a lot get confused with multitasking. Heavy head pressure behind my eyes really hot. But freezing to the point it hurts.
The dr told me I needed a support group. Nero is trying to figure out the ischemic disease. Had a CTA scan and ultrasound of my arteries on the 20th. Just waiting for appt.
With Dr. My platelets went done to 385. That was a high 5. I pray I get to be me again. Like I’m in a fog. Not here.
Looking for reassurance that this is my new way. Does it get better some days I’m me I feel great. I get all excited and then the tiredness happens and I get frustrated. Thanks for listening. I have faith and we all need to help each other. Thank you
@amlqueen
I am sorry for your diagnosis. I have ET/JAK2 as well. Mine was diagnosed in the spring of 2025. I had no symptoms from it except high platelets. I felt fine. I was prescribed HU 500mg 5 days a week and I am on plavix instead of aspirin. I was given a pamphlet about HU side effects. I really hated the idea that I have to take that drug. I didn't start to take it until Dec. 2025, because last spring I had quite a bad slow healing wound on my leg, and one of the HU side effects is that it may cause leg ulcers. Then in the fall my platelet counts were getting too high and my wound had healed. My platelet count was 776 on Dec. 4. I started HU (5 days a week 500mg) on Dec. 7 and my last blood draw was Jan. 12 and platelet count was 633.
I don't have too bad side-effects from HU, - thinning hair, sometimes stomach discomfort etc. I liked your description of headache - "Then I get this heavy head. Really hot a head ache pressure head ache". That is exactly how my head feels sometimes. It almost feels like the pressure is against the scalp and then behind and above eyes.
I am much older than you. I had my 80th birthday last fall.
I hope you start feeling much better and get your medications settled.
Best wishes,
- Hipsu
I am living with both. On 325 aspirin 1 x day and 500 mg Hydrea 2 x day. I am only 55 yrs old. And not dealing with this well. I want to be me again. Tired a lot get confused with multitasking. Heavy head pressure behind my eyes really hot. But freezing to the point it hurts.
The dr told me I needed a support group. Nero is trying to figure out the ischemic disease. Had a CTA scan and ultrasound of my arteries on the 20th. Just waiting for appt.
With Dr. My platelets went done to 385. That was a high 5. I pray I get to be me again. Like I’m in a fog. Not here.
Looking for reassurance that this is my new way. Does it get better some days I’m me I feel great. I get all excited and then the tiredness happens and I get frustrated. Thanks for listening. I have faith and we all need to help each other. Thank you
@amlqueen oh hi Annette, I understand completely. I just started on hydrea 500 mg twice a day and it is exhausting. I also have been diagnosed with long Covid so the ups and downs are very powerful. I can’t say that it’s gonna get better but I can say you’re gonna have good days and bad days kind of like what you’re going through. If your platelets are low enough, your doctor might cut back on the hydrea which will help immensely I really bottomed out when I started twice a day. I only take 81 mg of aspirin a day I have been alive with this since 1992 so I feel like you can still have a life at times like this. You just have to know that you’re gonna have better days. I’m wondering if you can go down to one pill a day and still have the same platelet results with 325 mg of aspirin daily. You’re not gonna have a stroke. I would ask about going down to one pill a day and less aspirin daily. It is frustrating to go to my doctor now because I feel like I’m on a wait and watch list. Don’t do anything until something happens. We all know what that means hang in there and try not to be too worried about having a life as long as you’re living a life ….you have one. try to make the most of it
Leene
I am living with both. On 325 aspirin 1 x day and 500 mg Hydrea 2 x day. I am only 55 yrs old. And not dealing with this well. I want to be me again. Tired a lot get confused with multitasking. Heavy head pressure behind my eyes really hot. But freezing to the point it hurts.
The dr told me I needed a support group. Nero is trying to figure out the ischemic disease. Had a CTA scan and ultrasound of my arteries on the 20th. Just waiting for appt.
With Dr. My platelets went done to 385. That was a high 5. I pray I get to be me again. Like I’m in a fog. Not here.
Looking for reassurance that this is my new way. Does it get better some days I’m me I feel great. I get all excited and then the tiredness happens and I get frustrated. Thanks for listening. I have faith and we all need to help each other. Thank you
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@janemc Thank you for everything. Have a Blessed day. It gives me hope I’m not alone.
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6 Reactions@amlqueen
Only if a physician has ET does she or he know what it means. So rely on your hematologist for blood counts, but come here to learn how to live with this.
Some days are good and some are not. It's tough! And it's a safe bet that no one you know has ever even heard of ET, so this can really make you feel isolated.
Here's my experience with ET and HU. I was started at a low dose. I'm grateful to my oncologist for that, because it's probably why I've never had any side effects.
It took 8 months for HU to stop my platelet count from climbing; more than 2 years to bring the count down into the normal range.
Waiting for that to happen was frustrating. But long before the count was normal, I was getting relief from headaches. I felt much stronger too. That's what HU has done for me.
We each experience ET and HU differently. I tell you my story to give you hope!
To better days ahead.
-
Like -
Helpful -
Hug
8 Reactions@amlqueen
Sorry taking HU
The next day the symptoms are back.
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Hug
1 Reaction@janemc
Thank you
Frustration is key
The fog is hard also. I’m a factual person and the way hematologist takes you take HU and Aspirin and live a normal life. I try but I’m not the same I have a good day and think it’s over and then the next day it’s back. I thank you for the feed back. I guess I want to hear that the things I’m feeling is just part of ET and taking ET. Then I can get through it better and deal with my symptoms and take it easy when I need too. Does it get better the longer your on HU. It’s been may be 5 months I believe
-
Like -
Helpful -
Hug
3 ReactionsHi! Welcome to the group! I also have ET with positive JAK2. When I was first diagnosed they had not discovered the JAK2 enzyme yet. So in those days, they tested you for everything and if you were negative for all other disorders and had high platelets, you were told you had ET. All of us take different amounts of Hydroxyuria (hydrea). My dose is 500 mg, five days a week. This keeps my platelet count in the 400,000. I also take a daily baby aspirin. I was first diagnosed at age 45. Started Hydroxyuria at age 50. I’m 69 years now and have been on this med for 19 years. Other than feeling a bit tired, I am very fortunate and do not have any problems. Keep up the positive vibes! We are so lucky there is treatment to lower our platelet count!
-
Like -
Helpful -
Hug
11 ReactionsThe ET diagnosis can be scary. Even though my blood pressure is normal at home, it goes off the chart when I am getting a blood test ...white coat syndrome?
I have been on daily aspirin and 500 mg hydroxyurea daily since May 2025. I will be 72 in March.
This past January 5th, for the first time, my platelet count and other blood related measurements were in the normal range from a high initially of 575.
Each day is a gift and I thank God I have had no side effects.
Praying for everyone facing ET and for guidance for the doctors who treat us!
-
Like -
Helpful -
Hug
13 Reactions@amlqueen
Hello, Annette! With ET, way too much of our energy is mis-directed towards platelet production. It's hard to do anything when you are so tired.
Many of us have sensitivity to cold. I've learned to wear extra layers of clothing, taking special care to keep my chest (heart) warm.
It's believed that ET's headaches come from our too-thick, platelet-heavy blood trying to pass through the tiny vessels in our heads. The headaches can be awful.
With your platelet count down to 385, you are doing great! I hope that you -- like me -- will have relief from ET's exhaustion and headaches as HU continues to work for you.
ET's tough. Please be kind to yourself.
-
Like -
Helpful -
Hug
8 Reactions@amlqueen
I am sorry for your diagnosis. I have ET/JAK2 as well. Mine was diagnosed in the spring of 2025. I had no symptoms from it except high platelets. I felt fine. I was prescribed HU 500mg 5 days a week and I am on plavix instead of aspirin. I was given a pamphlet about HU side effects. I really hated the idea that I have to take that drug. I didn't start to take it until Dec. 2025, because last spring I had quite a bad slow healing wound on my leg, and one of the HU side effects is that it may cause leg ulcers. Then in the fall my platelet counts were getting too high and my wound had healed. My platelet count was 776 on Dec. 4. I started HU (5 days a week 500mg) on Dec. 7 and my last blood draw was Jan. 12 and platelet count was 633.
I don't have too bad side-effects from HU, - thinning hair, sometimes stomach discomfort etc. I liked your description of headache - "Then I get this heavy head. Really hot a head ache pressure head ache". That is exactly how my head feels sometimes. It almost feels like the pressure is against the scalp and then behind and above eyes.
I am much older than you. I had my 80th birthday last fall.
I hope you start feeling much better and get your medications settled.
Best wishes,
- Hipsu
-
Like -
Helpful -
Hug
8 Reactions@amlqueen oh hi Annette, I understand completely. I just started on hydrea 500 mg twice a day and it is exhausting. I also have been diagnosed with long Covid so the ups and downs are very powerful. I can’t say that it’s gonna get better but I can say you’re gonna have good days and bad days kind of like what you’re going through. If your platelets are low enough, your doctor might cut back on the hydrea which will help immensely I really bottomed out when I started twice a day. I only take 81 mg of aspirin a day I have been alive with this since 1992 so I feel like you can still have a life at times like this. You just have to know that you’re gonna have better days. I’m wondering if you can go down to one pill a day and still have the same platelet results with 325 mg of aspirin daily. You’re not gonna have a stroke. I would ask about going down to one pill a day and less aspirin daily. It is frustrating to go to my doctor now because I feel like I’m on a wait and watch list. Don’t do anything until something happens. We all know what that means hang in there and try not to be too worried about having a life as long as you’re living a life ….you have one. try to make the most of it
Leene
-
Like -
Helpful -
Hug
7 ReactionsI am living with both. On 325 aspirin 1 x day and 500 mg Hydrea 2 x day. I am only 55 yrs old. And not dealing with this well. I want to be me again. Tired a lot get confused with multitasking. Heavy head pressure behind my eyes really hot. But freezing to the point it hurts.
The dr told me I needed a support group. Nero is trying to figure out the ischemic disease. Had a CTA scan and ultrasound of my arteries on the 20th. Just waiting for appt.
With Dr. My platelets went done to 385. That was a high 5. I pray I get to be me again. Like I’m in a fog. Not here.
Looking for reassurance that this is my new way. Does it get better some days I’m me I feel great. I get all excited and then the tiredness happens and I get frustrated. Thanks for listening. I have faith and we all need to help each other. Thank you
-
Like -
Helpful -
Hug
2 Reactions