@lisanell I’ve been taking HU for 10 years (1000 to 1500mg daily) and it definitely caused redness around the ankles as well as ankle ulcers if my dosage went over 1500mg. Even under 1500mg I had to be very careful about scraping my ankles. These ankle wounds would take a while to heal and would require careful attention. Trust me these symptoms are HU related. I’ve been off HU for 8 weeks and my ankles are no longer red and an ankle ulcers I got cleared up quickly.
Totally understand what works for one may not for someone else. I am being watched by my DR every 3 mos and in between by the PA. My platelets in my life have never gone sky high sometimes normal other times 400-500 and couple times a 600 and 700 thrown in there. The HU brought the platelets down to 200 very fast when first took it but a long with it I felt sooo sick constantly for one full year. I kept asking and even pleading if there was something else I could go on and he flat out told me no end of discussion. My PCP even told me no one should be on something that is making them so sick it is messing up their life on a daily basis and yet having to be on it for life, that is when he referred me to someone else. My new Dr has mentioned he would like to see me on something also but for now as my platelets have been in the normal range for 8 mos now we will just wait and watch. I myself have read a lot about what can lower platelets and keep them from getting sticky and being it is all natural and dietary causing no harm decided to try it and so far my platelets have stayed stable for 8 mos. It just may be a fluke or it is working so I will continue it being it is no bother. I see my DR in a few wks and get very nervous each time I go because as he walks through the door he announces the results. So for now I am happy who knows how long it will last. I also have severe CKD which I was dx at 10 so anything I take in medicines I have to be careful due to more injury to the kidneys. I feel I am dealing with a double whammy. Everyone out there on HU and working for you I really envy you and God bless you but for me it was pure misery everyday for a year. Take care.
Totally understand what works for one may not for someone else. I am being watched by my DR every 3 mos and in between by the PA. My platelets in my life have never gone sky high sometimes normal other times 400-500 and couple times a 600 and 700 thrown in there. The HU brought the platelets down to 200 very fast when first took it but a long with it I felt sooo sick constantly for one full year. I kept asking and even pleading if there was something else I could go on and he flat out told me no end of discussion. My PCP even told me no one should be on something that is making them so sick it is messing up their life on a daily basis and yet having to be on it for life, that is when he referred me to someone else. My new Dr has mentioned he would like to see me on something also but for now as my platelets have been in the normal range for 8 mos now we will just wait and watch. I myself have read a lot about what can lower platelets and keep them from getting sticky and being it is all natural and dietary causing no harm decided to try it and so far my platelets have stayed stable for 8 mos. It just may be a fluke or it is working so I will continue it being it is no bother. I see my DR in a few wks and get very nervous each time I go because as he walks through the door he announces the results. So for now I am happy who knows how long it will last. I also have severe CKD which I was dx at 10 so anything I take in medicines I have to be careful due to more injury to the kidneys. I feel I am dealing with a double whammy. Everyone out there on HU and working for you I really envy you and God bless you but for me it was pure misery everyday for a year. Take care.
Hi just joined, I was diagnosed with ET JAK2 circa Dec 2020 my platelets, RCC, MCV, MCH levels have been above "those recommended" and still are. I take two 500mg of Hydroxy carbamide daily along with 75mg of Aspirin. As my blood pressure is outside the recommended range I'm now taking 50mg of Losartan daily. Like most people I have good and bad days but just get on with it. I'm 70 and live in England 😎
Hi just joined, I was diagnosed with ET JAK2 circa Dec 2020 my platelets, RCC, MCV, MCH levels have been above "those recommended" and still are. I take two 500mg of Hydroxy carbamide daily along with 75mg of Aspirin. As my blood pressure is outside the recommended range I'm now taking 50mg of Losartan daily. Like most people I have good and bad days but just get on with it. I'm 70 and live in England 😎
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?
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?
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@jp2000
Is the ankle problem the reason you got off HU?
White or purple grape juice?
Totally understand what works for one may not for someone else. I am being watched by my DR every 3 mos and in between by the PA. My platelets in my life have never gone sky high sometimes normal other times 400-500 and couple times a 600 and 700 thrown in there. The HU brought the platelets down to 200 very fast when first took it but a long with it I felt sooo sick constantly for one full year. I kept asking and even pleading if there was something else I could go on and he flat out told me no end of discussion. My PCP even told me no one should be on something that is making them so sick it is messing up their life on a daily basis and yet having to be on it for life, that is when he referred me to someone else. My new Dr has mentioned he would like to see me on something also but for now as my platelets have been in the normal range for 8 mos now we will just wait and watch. I myself have read a lot about what can lower platelets and keep them from getting sticky and being it is all natural and dietary causing no harm decided to try it and so far my platelets have stayed stable for 8 mos. It just may be a fluke or it is working so I will continue it being it is no bother. I see my DR in a few wks and get very nervous each time I go because as he walks through the door he announces the results. So for now I am happy who knows how long it will last. I also have severe CKD which I was dx at 10 so anything I take in medicines I have to be careful due to more injury to the kidneys. I feel I am dealing with a double whammy. Everyone out there on HU and working for you I really envy you and God bless you but for me it was pure misery everyday for a year. Take care.
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1 Reaction@janeto1357
Hu works for me
My big problem is sudden falls
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1 Reaction@mib anyone else outside and fall
@panamsandy yes.
I am
Hi just joined, I was diagnosed with ET JAK2 circa Dec 2020 my platelets, RCC, MCV, MCH levels have been above "those recommended" and still are. I take two 500mg of Hydroxy carbamide daily along with 75mg of Aspirin. As my blood pressure is outside the recommended range I'm now taking 50mg of Losartan daily. Like most people I have good and bad days but just get on with it. I'm 70 and live in England 😎
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Helpful -
Hug
2 ReactionsWelcome 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?
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Like -
Helpful -
Hug
4 ReactionsI'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?