Hi,
This group has been very helpful.💕💕
I’ve been on 500 Hydrea for 9 months. My doctor cut back from 7 days to 5 days because of the fatigue. The tingling in my fingers and toes is better. My platelets started at 970, then went down to 480 and now are back up to 565. My doctor said it takes at least a year to get the right dosage.
Does anyone have trouble with your nails splitting and peeling? I’m 71 and could be age. I’ve tried everything!
I also get a sharp twinge of pain in my head once in a while. I had this with Covid a couple of years ago. I’m just wondering if it’s ET or the Hydrea?
It did get better for me. I’ve been on the same regiment for 8 months now; my platelets have dropped into the 350 area and I no longer have the fog or chronic tiredness. I do exercise a fair amount. Maybe that helped too. Best of luck to you on your journey!
@tree7737 I have been for 6 years they went up to 400 for a bit due to a thyroid problem caused by mold exposure, both fixed now. No problems thank God with hydroxyurea
I have had essential thrombocythemia since 2022. My oncologist put me on hydroxyurea 1000 mg a day. I am 79 years old. I of course, have fatigue and deal with that on a daily basis. It is not extreme, but very annoying. My red blood Count has been at 2.6. My oncologist has taken me off of the hydroxyurea because it is bringing down my red blood count and not controlling my platelets enough. He has put me on anagrelide. I have to take this med three times a day. It has caused some digestive and diarrhea problems. At my last blood track, my platelets had come down, and my red blood count has gone up slightly. I would love to hear from some other people that are taking the anagrelide. Thank you so much and I hope to hear from someone
@appraiser1946 Hello! I have been on Hydroxyurea since 1992. I am 68 years old and we did try a stent with Anagrelide for about 7 years. My Oncologist took me off because he was reading that it could cause myelofibrosis if used for too long. He put me back on Hydroxyurea 500 daily and that worked well for 25 years. Now my counts are not as controlled and I have converted to PV. I am now on Hydroxyurea 1000mg daily. I like the Anagrelide time period. Not as much hair loss or fatigue. I was only on one pill a day at that time. Ask you doc about long term use, but in the mean time it sounds like the right direction to keep your RBC up. Do you have low Iron as well? Leene
I have had essential thrombocythemia since 2022. My oncologist put me on hydroxyurea 1000 mg a day. I am 79 years old. I of course, have fatigue and deal with that on a daily basis. It is not extreme, but very annoying. My red blood Count has been at 2.6. My oncologist has taken me off of the hydroxyurea because it is bringing down my red blood count and not controlling my platelets enough. He has put me on anagrelide. I have to take this med three times a day. It has caused some digestive and diarrhea problems. At my last blood track, my platelets had come down, and my red blood count has gone up slightly. I would love to hear from some other people that are taking the anagrelide. Thank you so much and I hope to hear from someone
I am and 82 year old female. I have been living with ET for over 11 years. My count is usually around 380. I have been on HU for most of the time and have been going strong.
I’m on 500 mg 1 time daily have been on this medication for a year. Platelets were 1330 have gone down to 560 I have no headache….I do have Very dry eyes, itchy skin, hair loss. fatigue…I have read a lot of people, on this medication has side effects that include headaches. Good luck to you on this journey.
It did get better for me. I’ve been on the same regiment for 8 months now; my platelets have dropped into the 350 area and I no longer have the fog or chronic tiredness. I do exercise a fair amount. Maybe that helped too. Best of luck to you on your journey!
@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
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Hi,
This group has been very helpful.💕💕
I’ve been on 500 Hydrea for 9 months. My doctor cut back from 7 days to 5 days because of the fatigue. The tingling in my fingers and toes is better. My platelets started at 970, then went down to 480 and now are back up to 565. My doctor said it takes at least a year to get the right dosage.
Does anyone have trouble with your nails splitting and peeling? I’m 71 and could be age. I’ve tried everything!
I also get a sharp twinge of pain in my head once in a while. I had this with Covid a couple of years ago. I’m just wondering if it’s ET or the Hydrea?
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3 Reactions@tree7737 I have been for 6 years they went up to 400 for a bit due to a thyroid problem caused by mold exposure, both fixed now. No problems thank God with hydroxyurea
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6 Reactions@appraiser1946 Hello! I have been on Hydroxyurea since 1992. I am 68 years old and we did try a stent with Anagrelide for about 7 years. My Oncologist took me off because he was reading that it could cause myelofibrosis if used for too long. He put me back on Hydroxyurea 500 daily and that worked well for 25 years. Now my counts are not as controlled and I have converted to PV. I am now on Hydroxyurea 1000mg daily. I like the Anagrelide time period. Not as much hair loss or fatigue. I was only on one pill a day at that time. Ask you doc about long term use, but in the mean time it sounds like the right direction to keep your RBC up. Do you have low Iron as well? Leene
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Helpful -
Hug
9 ReactionsI have had essential thrombocythemia since 2022. My oncologist put me on hydroxyurea 1000 mg a day. I am 79 years old. I of course, have fatigue and deal with that on a daily basis. It is not extreme, but very annoying. My red blood Count has been at 2.6. My oncologist has taken me off of the hydroxyurea because it is bringing down my red blood count and not controlling my platelets enough. He has put me on anagrelide. I have to take this med three times a day. It has caused some digestive and diarrhea problems. At my last blood track, my platelets had come down, and my red blood count has gone up slightly. I would love to hear from some other people that are taking the anagrelide. Thank you so much and I hope to hear from someone
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Hug
9 ReactionsI am and 82 year old female. I have been living with ET for over 11 years. My count is usually around 380. I have been on HU for most of the time and have been going strong.
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15 Reactions@tree7737 the fog was hard for me too. Fortunately I seemed to have “ out grown it”! I hope you will too!
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6 ReactionsI’m on 500 mg 1 time daily have been on this medication for a year. Platelets were 1330 have gone down to 560 I have no headache….I do have Very dry eyes, itchy skin, hair loss. fatigue…I have read a lot of people, on this medication has side effects that include headaches. Good luck to you on this journey.
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Like -
Helpful -
Hug
5 ReactionsIt did get better for me. I’ve been on the same regiment for 8 months now; my platelets have dropped into the 350 area and I no longer have the fog or chronic tiredness. I do exercise a fair amount. Maybe that helped too. Best of luck to you on your journey!
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8 Reactions@amlqueen
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3 ReactionsET is a constant juggle. I am immensely grateful for my onc team/m, specifically my MPN specialist, Dr. Angela Fleishman
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4 Reactions