@dewz13 I am finally stabilized after being dx'ed mid November 2024. My platelets now vary from low 300s to mid 500s. I still get my blood work done every two weeks and have only been stable for about two months. To be honest, I didn’t think I would ever get there.
@julmo wow. Had no idea you needed to do blood work that frequently. This is new to me. I have my first check next week. I am so happy that you have stabilized and I send best wishes that you remain so!
Has anybody experienced being lightheaded/fainting, vomiting and sweating? It happened the second time to me yesterday. After the episodes I feel good again. Went to the Dr. aftet it happened first time 3 months ago. I had a Heart monitor for 12 days and a Brain Scan. Both results negative. I do have a lower heart rate, but Dr. said it is ok. Diagnosed with Jak2 in November 2022. I am 70 years old. Otherwise doing pretty good. Taking 1000 mg Hydroxuria every day. Hematologist is convinced it has nothing to do with ET.
@julmo wow. Had no idea you needed to do blood work that frequently. This is new to me. I have my first check next week. I am so happy that you have stabilized and I send best wishes that you remain so!
Has anybody experienced being lightheaded/fainting, vomiting and sweating? It happened the second time to me yesterday. After the episodes I feel good again. Went to the Dr. aftet it happened first time 3 months ago. I had a Heart monitor for 12 days and a Brain Scan. Both results negative. I do have a lower heart rate, but Dr. said it is ok. Diagnosed with Jak2 in November 2022. I am 70 years old. Otherwise doing pretty good. Taking 1000 mg Hydroxuria every day. Hematologist is convinced it has nothing to do with ET.
"Hematologist is convinced it has nothing to do with ET."
Fiddlesticks. Shame on your hematologist.
Being dizzy and lightheaded are well-known symptoms of ET.
Because our platelet-heavy blood doesn't circulate well, we have less blood flow to the brain. Naturally, that can cause dizziness, not to mention killer headaches. It's to ease blood flow that many of us take a low-dose aspirin every day.
Hot flashes are another well-known symptom of ET!
Why? Our oversized and misshapen platelets are so weird that they set off our immune response. And the release of histamines ignites hot flashes. For me, the immune response also makes it hard to breathe -- than can cause lightheadedness too.
Many of us find taking an antihistamine helps. But since we are all different, please check with your doctor before taking anything new.
It's great no heart or brain issues were found! It's really frustrating, though, when our doctors don't know enough to give us the help we deserve.
Has anybody experienced being lightheaded/fainting, vomiting and sweating? It happened the second time to me yesterday. After the episodes I feel good again. Went to the Dr. aftet it happened first time 3 months ago. I had a Heart monitor for 12 days and a Brain Scan. Both results negative. I do have a lower heart rate, but Dr. said it is ok. Diagnosed with Jak2 in November 2022. I am 70 years old. Otherwise doing pretty good. Taking 1000 mg Hydroxuria every day. Hematologist is convinced it has nothing to do with ET.
@ina2022 I have "sinking spells," but never black out ... yet. Mine are caused by wonky heart valve and sudden BP drops, so not ET.
The sweaty vomiting with faintness would make me ask if this could be a side effect of hydroxyurea, and if lowering my hydroxyurea dose might help. Or if an anti nausea pill could be prescribed.
Most medical textbooks tell docs that ET is a symptomless disease except for clots, so it's very common for patients to get waved away when they report problems. Then they follow up with the GP, get bounced to another specialist, then, when that shows nothing, booted back to the oncologist who will then (maybe) dig a bit more and figure it out. Also remember that most oncologists can count the number if their ET patients on one hand, and most of them are women over 50, not an age group docs take seriously.
Sad fact, unless you are going to an MPN specialist, you and your oncologist are almost on the same learning curve.
"Hematologist is convinced it has nothing to do with ET."
Fiddlesticks. Shame on your hematologist.
Being dizzy and lightheaded are well-known symptoms of ET.
Because our platelet-heavy blood doesn't circulate well, we have less blood flow to the brain. Naturally, that can cause dizziness, not to mention killer headaches. It's to ease blood flow that many of us take a low-dose aspirin every day.
Hot flashes are another well-known symptom of ET!
Why? Our oversized and misshapen platelets are so weird that they set off our immune response. And the release of histamines ignites hot flashes. For me, the immune response also makes it hard to breathe -- than can cause lightheadedness too.
Many of us find taking an antihistamine helps. But since we are all different, please check with your doctor before taking anything new.
It's great no heart or brain issues were found! It's really frustrating, though, when our doctors don't know enough to give us the help we deserve.
@ina2022 I have "sinking spells," but never black out ... yet. Mine are caused by wonky heart valve and sudden BP drops, so not ET.
The sweaty vomiting with faintness would make me ask if this could be a side effect of hydroxyurea, and if lowering my hydroxyurea dose might help. Or if an anti nausea pill could be prescribed.
Most medical textbooks tell docs that ET is a symptomless disease except for clots, so it's very common for patients to get waved away when they report problems. Then they follow up with the GP, get bounced to another specialist, then, when that shows nothing, booted back to the oncologist who will then (maybe) dig a bit more and figure it out. Also remember that most oncologists can count the number if their ET patients on one hand, and most of them are women over 50, not an age group docs take seriously.
Sad fact, unless you are going to an MPN specialist, you and your oncologist are almost on the same learning curve.
@nohrt4me Thank you for your reply. Taking to my Primary Care Dr. tomorrow. Had my 4 months check up with my Hem/Onc last week. Everything looked good. ET is very complex, maybe we just have to deal with it. Very frustrating.
Hi. I have ET Jak2, diagnosed August 2025. Just wondering if anyone here is using Interferon as their treatment? I have gut and a few other health issues which are being generally managed but it seems as I age, (60 yrs) more arise. I am worried about the potential side affects of using Hydroxy as mentioned in this group, but I am also worried if it will bring on more health issues. My platelets stayed around 870 for 5 months but they have jumped to 920 in the latest blood test, 2 weeks ago. I take 100mg daily asprin. My haematologist has advised I will start Hydroxy when my platelets reach 1000, although I can start now if I choose to. I asked him about other treatments and he mentioned Interferon. He advised the treatment is just as effective although usually used in younger patients, conceiving or pregnant women or those that can't tolerate Hydroxy. It is not a chemo drug, it's an antiviral so works by stimulating the immune system. It's also administered by injection. As with anything there are side affects. He mentioned flu like symptoms, nausea and fatigue which can affect quality of life. I've read that depression is another side affect and 20-30% of patients stop taking it due to the side affects. I'm thinking of trying it first and would love to know if anyone here is using it and what their experience is. Thanks
Hi. I have ET Jak2, diagnosed August 2025. Just wondering if anyone here is using Interferon as their treatment? I have gut and a few other health issues which are being generally managed but it seems as I age, (60 yrs) more arise. I am worried about the potential side affects of using Hydroxy as mentioned in this group, but I am also worried if it will bring on more health issues. My platelets stayed around 870 for 5 months but they have jumped to 920 in the latest blood test, 2 weeks ago. I take 100mg daily asprin. My haematologist has advised I will start Hydroxy when my platelets reach 1000, although I can start now if I choose to. I asked him about other treatments and he mentioned Interferon. He advised the treatment is just as effective although usually used in younger patients, conceiving or pregnant women or those that can't tolerate Hydroxy. It is not a chemo drug, it's an antiviral so works by stimulating the immune system. It's also administered by injection. As with anything there are side affects. He mentioned flu like symptoms, nausea and fatigue which can affect quality of life. I've read that depression is another side affect and 20-30% of patients stop taking it due to the side affects. I'm thinking of trying it first and would love to know if anyone here is using it and what their experience is. Thanks
@kat260 Hello, I am 60 years as well and diagnosed with Et Jak 2 in November 2025 and since then on HU. No sideeffects yet and the platelets have significantly dropped. However I am thinking about taking interferon instead because of the chance to influence the mutation itself . I am gonna have and appointment with an Mpn specialist soon who has recently proven that it will work for et similarly to pv even for older patients . I will keep you up in the loop about his recommendations particularly regarding the sideeffects.
Hi. I have ET Jak2, diagnosed August 2025. Just wondering if anyone here is using Interferon as their treatment? I have gut and a few other health issues which are being generally managed but it seems as I age, (60 yrs) more arise. I am worried about the potential side affects of using Hydroxy as mentioned in this group, but I am also worried if it will bring on more health issues. My platelets stayed around 870 for 5 months but they have jumped to 920 in the latest blood test, 2 weeks ago. I take 100mg daily asprin. My haematologist has advised I will start Hydroxy when my platelets reach 1000, although I can start now if I choose to. I asked him about other treatments and he mentioned Interferon. He advised the treatment is just as effective although usually used in younger patients, conceiving or pregnant women or those that can't tolerate Hydroxy. It is not a chemo drug, it's an antiviral so works by stimulating the immune system. It's also administered by injection. As with anything there are side affects. He mentioned flu like symptoms, nausea and fatigue which can affect quality of life. I've read that depression is another side affect and 20-30% of patients stop taking it due to the side affects. I'm thinking of trying it first and would love to know if anyone here is using it and what their experience is. Thanks
@kat260 if you have any autoimmune conditions, proceed with caution with interferons. It can make those worse. Patients who have suffered from that effect advise to start with a low dose and increase slowly. Some people may take both HU and Interferon because the HU usually reduces the platelets quickly. I take HU at a low dose and it has been sufficiently effective to reduce my ET symptoms. I cannot say I have any side effects so I don’t think the drug is something to be afraid of. People have been safely taking it for many years. On the other hand, people with MPNs experience different symptoms, severity and reactions to drugs. I don’t think there are always clear reasons why so ultimately you just have to try the drugs and see how you fare. There is some research that suggests JAK2 patients may be able to reduce mutation level with the treatment. If you want to hear from patients on interferon, there are quite a few on the Health Unlocked platform.
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@julmo wow. Had no idea you needed to do blood work that frequently. This is new to me. I have my first check next week. I am so happy that you have stabilized and I send best wishes that you remain so!
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1 ReactionHas anybody experienced being lightheaded/fainting, vomiting and sweating? It happened the second time to me yesterday. After the episodes I feel good again. Went to the Dr. aftet it happened first time 3 months ago. I had a Heart monitor for 12 days and a Brain Scan. Both results negative. I do have a lower heart rate, but Dr. said it is ok. Diagnosed with Jak2 in November 2022. I am 70 years old. Otherwise doing pretty good. Taking 1000 mg Hydroxuria every day. Hematologist is convinced it has nothing to do with ET.
@dewz13
After diagnosis, we need frequent blood work to assess how whatever treatment we're having is working.
Once our platelet counts begin to drop, we don't need blood draws so often.
Did your hematologist recommend Hydrea (HU)? Please be aware that while some of us respond quickly to HU, others don't!
Be patient. Every dose is helping you!
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1 Reaction@ina2022
"Hematologist is convinced it has nothing to do with ET."
Fiddlesticks. Shame on your hematologist.
Being dizzy and lightheaded are well-known symptoms of ET.
Because our platelet-heavy blood doesn't circulate well, we have less blood flow to the brain. Naturally, that can cause dizziness, not to mention killer headaches. It's to ease blood flow that many of us take a low-dose aspirin every day.
Hot flashes are another well-known symptom of ET!
Why? Our oversized and misshapen platelets are so weird that they set off our immune response. And the release of histamines ignites hot flashes. For me, the immune response also makes it hard to breathe -- than can cause lightheadedness too.
Many of us find taking an antihistamine helps. But since we are all different, please check with your doctor before taking anything new.
It's great no heart or brain issues were found! It's really frustrating, though, when our doctors don't know enough to give us the help we deserve.
-
Like -
Helpful -
Hug
6 Reactions@ina2022 I have "sinking spells," but never black out ... yet. Mine are caused by wonky heart valve and sudden BP drops, so not ET.
The sweaty vomiting with faintness would make me ask if this could be a side effect of hydroxyurea, and if lowering my hydroxyurea dose might help. Or if an anti nausea pill could be prescribed.
Most medical textbooks tell docs that ET is a symptomless disease except for clots, so it's very common for patients to get waved away when they report problems. Then they follow up with the GP, get bounced to another specialist, then, when that shows nothing, booted back to the oncologist who will then (maybe) dig a bit more and figure it out. Also remember that most oncologists can count the number if their ET patients on one hand, and most of them are women over 50, not an age group docs take seriously.
Sad fact, unless you are going to an MPN specialist, you and your oncologist are almost on the same learning curve.
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5 Reactions@janemc Thank you for your reply. Yes, it is frustrating. I have another appointment with my Primary Care Dr. tomorrow.
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2 Reactions@nohrt4me Thank you for your reply. Taking to my Primary Care Dr. tomorrow. Had my 4 months check up with my Hem/Onc last week. Everything looked good. ET is very complex, maybe we just have to deal with it. Very frustrating.
-
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Helpful -
Hug
2 ReactionsHi. I have ET Jak2, diagnosed August 2025. Just wondering if anyone here is using Interferon as their treatment? I have gut and a few other health issues which are being generally managed but it seems as I age, (60 yrs) more arise. I am worried about the potential side affects of using Hydroxy as mentioned in this group, but I am also worried if it will bring on more health issues. My platelets stayed around 870 for 5 months but they have jumped to 920 in the latest blood test, 2 weeks ago. I take 100mg daily asprin. My haematologist has advised I will start Hydroxy when my platelets reach 1000, although I can start now if I choose to. I asked him about other treatments and he mentioned Interferon. He advised the treatment is just as effective although usually used in younger patients, conceiving or pregnant women or those that can't tolerate Hydroxy. It is not a chemo drug, it's an antiviral so works by stimulating the immune system. It's also administered by injection. As with anything there are side affects. He mentioned flu like symptoms, nausea and fatigue which can affect quality of life. I've read that depression is another side affect and 20-30% of patients stop taking it due to the side affects. I'm thinking of trying it first and would love to know if anyone here is using it and what their experience is. Thanks
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Helpful -
Hug
1 Reaction@kat260 Hello, I am 60 years as well and diagnosed with Et Jak 2 in November 2025 and since then on HU. No sideeffects yet and the platelets have significantly dropped. However I am thinking about taking interferon instead because of the chance to influence the mutation itself . I am gonna have and appointment with an Mpn specialist soon who has recently proven that it will work for et similarly to pv even for older patients . I will keep you up in the loop about his recommendations particularly regarding the sideeffects.
-
Like -
Helpful -
Hug
8 Reactions@kat260 if you have any autoimmune conditions, proceed with caution with interferons. It can make those worse. Patients who have suffered from that effect advise to start with a low dose and increase slowly. Some people may take both HU and Interferon because the HU usually reduces the platelets quickly. I take HU at a low dose and it has been sufficiently effective to reduce my ET symptoms. I cannot say I have any side effects so I don’t think the drug is something to be afraid of. People have been safely taking it for many years. On the other hand, people with MPNs experience different symptoms, severity and reactions to drugs. I don’t think there are always clear reasons why so ultimately you just have to try the drugs and see how you fare. There is some research that suggests JAK2 patients may be able to reduce mutation level with the treatment. If you want to hear from patients on interferon, there are quite a few on the Health Unlocked platform.
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Helpful -
Hug
7 Reactions