Its a fairly new diagnosis. I take 500 mg of HU twice a day. It has lowered the count from 1100 to 700.
I also am anemic , and have to get blood and iron transfusions.
I can simply prick my finger sometimes and it bleeds a lot.
Im td i most likely have a hidden GI bleed and thats why my hemoglobin drops so quickly.
Headache and fatigue are the two most reported symptoms of ET. I have a headache almost all the time.
Please be aware that treating our headaches gets a bit complicated. You can't just pop NSAIDs, because they interfere with aspirin's very important effect on our blood.
You may get some relief by using topicals with menthol or lidocaine -- sprays, ointment, patches -- on the back of your neck. Topicals work through the skin, and do not interfere with aspirin.
There will be times will more pain relief will be needed. So please ask your oncologist about what NSAID will be best for you.
And if you do take an NSAID, wait a couple of hours after taking either HU or aspirin.
Headaches are definitely a side effect. I got them when I first started taking HU 500 mg twice a day, 7 days a week. My Heme/Onc started decreasing my dosage as my platelet numbers came down and now, with my platelet count around 200, I take it twice a day, four days a week. As the dosage decreased, the headaches did too and now I don't get them at all. Mine were sudden and severe, but of very short duration - less than 30 seconds. They occurred only when I stood up suddenly and would literally stop me in my tracks.
You’re in the right place. There is a lot of good information here. Many of us are living normal lives while taking our daily Hydrea dose with little or no side effects. I turned 70 this year and I’m still quite active. Fatigue is the biggest problem, but is that because I’m 70? It doesn’t stop me from playing ice hockey 3 times a week and finishing the inside of a cabin.
Work with your doctor, follow your numbers and be your best advocate! You got this.
Hello update, my platelet counts finally got to 340 from 1000 back in December, after my Hydrea was increased to 1000 a day. I hope it stays that way and wonder where I will go from here. I have my energy back, just retired at 65 yrs old from working 40 years for the federal government. Plan to travel, teach a little and enjoy life.
Jennifer
Hello update, my platelet counts finally got to 340 from 1000 back in December, after my Hydrea was increased to 1000 a day. I hope it stays that way and wonder where I will go from here. I have my energy back, just retired at 65 yrs old from working 40 years for the federal government. Plan to travel, teach a little and enjoy life.
Jennifer
Congratulations, Jennifer on such a dramatic lowering of your platelet count!
It's likely your oncologist will continue monitoring your count on a regular basis. Blood work numbers may fluctuate a bit from time to time. Don't worry! That's normal with MPNs.
Thank you for your decades of government service. Please do something wonderful now. You've earned it!
Congratulations, Jennifer on such a dramatic lowering of your platelet count!
It's likely your oncologist will continue monitoring your count on a regular basis. Blood work numbers may fluctuate a bit from time to time. Don't worry! That's normal with MPNs.
Thank you for your decades of government service. Please do something wonderful now. You've earned it!
Thank you if it wasn't for the comments I would be a nervous wreck. Tha is for letting me know the numbers fluctuate that way I want be upset if they do. This report did make me joy my vacation better.
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Its a fairly new diagnosis. I take 500 mg of HU twice a day. It has lowered the count from 1100 to 700.
I also am anemic , and have to get blood and iron transfusions.
I can simply prick my finger sometimes and it bleeds a lot.
Im td i most likely have a hidden GI bleed and thats why my hemoglobin drops so quickly.
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Helpful -
Hug
2 ReactionsCongratulations on bringing down your platelets!
Headache and fatigue are the two most reported symptoms of ET. I have a headache almost all the time.
Please be aware that treating our headaches gets a bit complicated. You can't just pop NSAIDs, because they interfere with aspirin's very important effect on our blood.
You may get some relief by using topicals with menthol or lidocaine -- sprays, ointment, patches -- on the back of your neck. Topicals work through the skin, and do not interfere with aspirin.
There will be times will more pain relief will be needed. So please ask your oncologist about what NSAID will be best for you.
And if you do take an NSAID, wait a couple of hours after taking either HU or aspirin.
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2 ReactionsI get pretty much daily headache, mostly minor.
However, if under stress they are usually more intense
Eileen
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1 ReactionHeadaches are definitely a side effect. I got them when I first started taking HU 500 mg twice a day, 7 days a week. My Heme/Onc started decreasing my dosage as my platelet numbers came down and now, with my platelet count around 200, I take it twice a day, four days a week. As the dosage decreased, the headaches did too and now I don't get them at all. Mine were sudden and severe, but of very short duration - less than 30 seconds. They occurred only when I stood up suddenly and would literally stop me in my tracks.
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Helpful -
Hug
2 ReactionsHello update, my platelet counts finally got to 340 from 1000 back in December, after my Hydrea was increased to 1000 a day. I hope it stays that way and wonder where I will go from here. I have my energy back, just retired at 65 yrs old from working 40 years for the federal government. Plan to travel, teach a little and enjoy life.
Jennifer
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Helpful -
Hug
5 ReactionsCongratulations, Jennifer on such a dramatic lowering of your platelet count!
It's likely your oncologist will continue monitoring your count on a regular basis. Blood work numbers may fluctuate a bit from time to time. Don't worry! That's normal with MPNs.
Thank you for your decades of government service. Please do something wonderful now. You've earned it!
-
Like -
Helpful -
Hug
2 ReactionsThank you if it wasn't for the comments I would be a nervous wreck. Tha is for letting me know the numbers fluctuate that way I want be upset if they do. This report did make me joy my vacation better.
JENNIFER
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2 Reactions