Welcome to Mayo Connect, @bobbie1955. I love your attitude of “I have good days and bad days, but just get on with it.” Isn’t that the truth?! Some days it’s the best we can do. ☺️
So glad you popped into the forum to share your experience with having ET and your treatment plan. Have you been taking the hydroxyurea since your diagnosis is 2020?
@loribmt
Yes I've been taking hydroxyurea since diagnosis, started of on smaller amounts every other day which have gradually been increased. I don't know what the maximum dose is and I take more medication than a colleague who has a similar issue. My next consultants appointment is just before Christmas, so we'll see what happens
I've had ET Jak2 since 2020, with HU and baby aspirin. I know I'm not supposed to take any NSAIDs for arthritis pain, but tylenol doesn't relieve the pain. Does anyone use a good pain reliever medication that's not a NSAID?
It's really important to bring this question to your own doctors. They are your safest source of advice.
That being said, have you ever tried topical sprays or ointment? I've been told by an oncology PA that lidocaine and menthol don't interfere with aspirin or HU.
Do study the ingredient list before using any topical product, as some do contain NSAIDs.
Also wondering if any kind of water exercise is possible for you? My joints are happiest when I'm swimming laps.
@loribmt
Yes I've been taking hydroxyurea since diagnosis, started of on smaller amounts every other day which have gradually been increased. I don't know what the maximum dose is and I take more medication than a colleague who has a similar issue. My next consultants appointment is just before Christmas, so we'll see what happens
Diagnosed ET with Jak 2 617V mutation. Put on 5 days a week of 500 mg HU which held my platelets to about 600 range for over 3 years. I never had any problem with that amount of HU and platelets responded well. this year in March my platelets started to increase and also white and red cells and hematocrit. Consulted with Cleveland Clinic Dr. who wants a NGS myeloid panel to see if other gene mutations show up - has it really been PV or other vs. ET I think is the question. The testing could help with diagnoses and treatment. Having trouble getting United Healthcare to approve the testing, and my oncologist in Maryland has not been helpful without my pushing her staff to send the original request and now to appeal. Since May I have gone from 5 pills a week to 7, 9, 12 and now 14. They like hematocrit to be below 45 for clot risk. I know if I went off HU, readings would go through the roof. How can some go off and be able to control cell production? Maybe low risk and numbers not too high where wait and watch may have been possible? My understanding is HU is to keep cells to reasonable levels just to prevent heart attack or stroke/clots. Concerned about what is to come if HU stops working. Does anyone have a good Oncologist they could recommend in Maryland?
TW Diagnosed ET late 2021 w Jak 2 mutation age 63.
Diagnosed ET with Jak 2 617V mutation. Put on 5 days a week of 500 mg HU which held my platelets to about 600 range for over 3 years. I never had any problem with that amount of HU and platelets responded well. this year in March my platelets started to increase and also white and red cells and hematocrit. Consulted with Cleveland Clinic Dr. who wants a NGS myeloid panel to see if other gene mutations show up - has it really been PV or other vs. ET I think is the question. The testing could help with diagnoses and treatment. Having trouble getting United Healthcare to approve the testing, and my oncologist in Maryland has not been helpful without my pushing her staff to send the original request and now to appeal. Since May I have gone from 5 pills a week to 7, 9, 12 and now 14. They like hematocrit to be below 45 for clot risk. I know if I went off HU, readings would go through the roof. How can some go off and be able to control cell production? Maybe low risk and numbers not too high where wait and watch may have been possible? My understanding is HU is to keep cells to reasonable levels just to prevent heart attack or stroke/clots. Concerned about what is to come if HU stops working. Does anyone have a good Oncologist they could recommend in Maryland?
TW Diagnosed ET late 2021 w Jak 2 mutation age 63.
@lea123.
I also was told ET JAK2 on first diagnosis in 2023. But after 2 years on aspirin only and all blood counts slowly increasing, my diagnosis was changed to PV. Started HU 500mg daily in June 2025 and all counts are slowly decreasing.
I'm also in Maryland and have seen 3 different hema/oncologist.
Are you near Gaithersburg. Rockville or Bethesda area?
I've had ET Jak2 since 2020, with HU and baby aspirin. I know I'm not supposed to take any NSAIDs for arthritis pain, but tylenol doesn't relieve the pain. Does anyone use a good pain reliever medication that's not a NSAID?
@1995victoria I have JAK2/PV and take Hydroxyurea and low dose aspirin and I’ve taken 15mg of Mobic/meloxicam for at least 30 years. My hematologist and pharmacist were both aware of that when I was prescribed the HU. I’ve taken it for pain/arthritis in my back, shoulder and hip.
I have always been careful and always take it in the AM after breakfast. I take the HU late at night just before bed as recommended by my hematologist.
I've had ET Jak2 since 2020, with HU and baby aspirin. I know I'm not supposed to take any NSAIDs for arthritis pain, but tylenol doesn't relieve the pain. Does anyone use a good pain reliever medication that's not a NSAID?
@lea123.
I also was told ET JAK2 on first diagnosis in 2023. But after 2 years on aspirin only and all blood counts slowly increasing, my diagnosis was changed to PV. Started HU 500mg daily in June 2025 and all counts are slowly decreasing.
I'm also in Maryland and have seen 3 different hema/oncologist.
Are you near Gaithersburg. Rockville or Bethesda area?
Hello all,
Glad to have found this group. I am Alisa, a 59 year old female newly diagnosed with ET and JAK2 positive.
My doctor has put me on baby asprin 2x a day and 500mg of Hydroxyurea 1x daily. Had my bone marrow biopsy last week. Waiting for results.
I may have had a stroke at some point, or so my brain scan shows (no history of head injury). I have struggled with migraines for almost 20 years and have had 2 botox for migraine sessions (life changing!). Maybe the ET is the cause of the migraines and the stroke?
466 is the highest my platelets has gone. Often it is in the green zone. I still have so much to learn about all of this.
Glad to have this forum where I can read about others that share my diagnosis!
I am and I am glad to have found this group. I'm a 59 year old female newly diagnosed with ET and JAK2 positive. I am trying to learn all I can about it. I am also thinking of getting a second opinion.
Have most people had second opinions? UCSF (San Francisco) has a great reputation and has a second opinion division of their medical center.
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@loribmt
Yes I've been taking hydroxyurea since diagnosis, started of on smaller amounts every other day which have gradually been increased. I don't know what the maximum dose is and I take more medication than a colleague who has a similar issue. My next consultants appointment is just before Christmas, so we'll see what happens
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Like -
Helpful -
Hug
1 Reaction@1995victoria
It's really important to bring this question to your own doctors. They are your safest source of advice.
That being said, have you ever tried topical sprays or ointment? I've been told by an oncology PA that lidocaine and menthol don't interfere with aspirin or HU.
Do study the ingredient list before using any topical product, as some do contain NSAIDs.
Also wondering if any kind of water exercise is possible for you? My joints are happiest when I'm swimming laps.
-
Like -
Helpful -
Hug
1 Reaction@bobbie1955
It's great that you were started on a low HU dose. My oncologist did the same, and I believe that's why I've never suffered from any side effects.
It takes a while to find the dose that's perfect for you. And some people respond much more quickly to HU than others. Don't get discouraged!
Be patient and let us know how you're doing!
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Like -
Helpful -
Hug
2 ReactionsDiagnosed ET with Jak 2 617V mutation. Put on 5 days a week of 500 mg HU which held my platelets to about 600 range for over 3 years. I never had any problem with that amount of HU and platelets responded well. this year in March my platelets started to increase and also white and red cells and hematocrit. Consulted with Cleveland Clinic Dr. who wants a NGS myeloid panel to see if other gene mutations show up - has it really been PV or other vs. ET I think is the question. The testing could help with diagnoses and treatment. Having trouble getting United Healthcare to approve the testing, and my oncologist in Maryland has not been helpful without my pushing her staff to send the original request and now to appeal. Since May I have gone from 5 pills a week to 7, 9, 12 and now 14. They like hematocrit to be below 45 for clot risk. I know if I went off HU, readings would go through the roof. How can some go off and be able to control cell production? Maybe low risk and numbers not too high where wait and watch may have been possible? My understanding is HU is to keep cells to reasonable levels just to prevent heart attack or stroke/clots. Concerned about what is to come if HU stops working. Does anyone have a good Oncologist they could recommend in Maryland?
TW Diagnosed ET late 2021 w Jak 2 mutation age 63.
-
Like -
Helpful -
Hug
1 Reaction@lea123.
I also was told ET JAK2 on first diagnosis in 2023. But after 2 years on aspirin only and all blood counts slowly increasing, my diagnosis was changed to PV. Started HU 500mg daily in June 2025 and all counts are slowly decreasing.
I'm also in Maryland and have seen 3 different hema/oncologist.
Are you near Gaithersburg. Rockville or Bethesda area?
-
Like -
Helpful -
Hug
2 Reactions@1995victoria I have JAK2/PV and take Hydroxyurea and low dose aspirin and I’ve taken 15mg of Mobic/meloxicam for at least 30 years. My hematologist and pharmacist were both aware of that when I was prescribed the HU. I’ve taken it for pain/arthritis in my back, shoulder and hip.
I have always been careful and always take it in the AM after breakfast. I take the HU late at night just before bed as recommended by my hematologist.
-
Like -
Helpful -
Hug
1 Reaction@1995victoria
I did not know you should not take Advils with hu
@mw2023 I am in Gaithersburg, but all of those places are close.
Hello all,
Glad to have found this group. I am Alisa, a 59 year old female newly diagnosed with ET and JAK2 positive.
My doctor has put me on baby asprin 2x a day and 500mg of Hydroxyurea 1x daily. Had my bone marrow biopsy last week. Waiting for results.
I may have had a stroke at some point, or so my brain scan shows (no history of head injury). I have struggled with migraines for almost 20 years and have had 2 botox for migraine sessions (life changing!). Maybe the ET is the cause of the migraines and the stroke?
466 is the highest my platelets has gone. Often it is in the green zone. I still have so much to learn about all of this.
Glad to have this forum where I can read about others that share my diagnosis!
Thanks!
-
Like -
Helpful -
Hug
1 ReactionI am and I am glad to have found this group. I'm a 59 year old female newly diagnosed with ET and JAK2 positive. I am trying to learn all I can about it. I am also thinking of getting a second opinion.
Have most people had second opinions? UCSF (San Francisco) has a great reputation and has a second opinion division of their medical center.
Looking forward to reading all these comments!
Thanks everyone for sharing!
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Like -
Helpful -
Hug
3 Reactions