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.
@janeto1357
Hello, I was diagnosed with ET/JAK2 in 2023. I was prescribed HU 500 mg and within one month, it flared up severe neuropathy in the feet which was unbearable. I also was diagnosed with CMT, a neurological disease inherited from by father. My hematologist immediately took me off the HU, and since then, put me on Eliquis, a blood thinner, and two 81 mg aspirin twice daily. My platelets are high and so far have stayed 700-800 range. My doctor feels this is ok for now, but may change treatment plan if the platelet continue to climb.
You mentioned you were also taking a natural supplement which has helped you. I’m very interested to know what you take. I do take several supplements and have for many years, but maybe there is something missing that could possibly help.
I’m 72 years old and I experience fatigue but it could be age as well as ET. Are there other symptoms you and others are experiencing from ET itself? Thank you.
@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
Hi @bobbie1955, Each person’s experience with ET can be unique to them. So it’s important not to compare your medication dosage with that of a friend…though I know how tempting that is! Been there myself. First question, “Am I being over or under medicated?”Right?
Often, doctors will make adjustments to the medication dosages based on blood work and trends in the blood numbers on lab result. Generally they try to give the minimum amount of medication to keep the situation under control. Considering your doctor had you start out slowly and gradually increasing dosages shows they’re keeping track on what may be working better for you. You mentioned that in spite of being on an increased dosage of Hydroxy, your blood numbers are still above normal.
Occasionally, there may come a point when a specific med isn’t quite doing the job as well as hoped and a new medication may be a better fit. At your next consultation with your doctor you’ll be able to talk this over with them.
Hopefully you get a lovely Christmas present of good news. ☺️
Will you please let me know what you find out?
@janeto1357
Hello, I was diagnosed with ET/JAK2 in 2023. I was prescribed HU 500 mg and within one month, it flared up severe neuropathy in the feet which was unbearable. I also was diagnosed with CMT, a neurological disease inherited from by father. My hematologist immediately took me off the HU, and since then, put me on Eliquis, a blood thinner, and two 81 mg aspirin twice daily. My platelets are high and so far have stayed 700-800 range. My doctor feels this is ok for now, but may change treatment plan if the platelet continue to climb.
You mentioned you were also taking a natural supplement which has helped you. I’m very interested to know what you take. I do take several supplements and have for many years, but maybe there is something missing that could possibly help.
I’m 72 years old and I experience fatigue but it could be age as well as ET. Are there other symptoms you and others are experiencing from ET itself? Thank you.
Is it possible for you to walk or do some gentle stretching every day? I find that I have more energy when I exercise a bit.
I'll be honest. Often I have to force myself to get on the treadmill or hop in the pool. But what do you know? After 10 minutes or so, the endorphins kick in and my mood lifts.
@janeto1357
Hello, I was diagnosed with ET/JAK2 in 2023. I was prescribed HU 500 mg and within one month, it flared up severe neuropathy in the feet which was unbearable. I also was diagnosed with CMT, a neurological disease inherited from by father. My hematologist immediately took me off the HU, and since then, put me on Eliquis, a blood thinner, and two 81 mg aspirin twice daily. My platelets are high and so far have stayed 700-800 range. My doctor feels this is ok for now, but may change treatment plan if the platelet continue to climb.
You mentioned you were also taking a natural supplement which has helped you. I’m very interested to know what you take. I do take several supplements and have for many years, but maybe there is something missing that could possibly help.
I’m 72 years old and I experience fatigue but it could be age as well as ET. Are there other symptoms you and others are experiencing from ET itself? Thank you.
@lrs1953 Hi, I got neuropathy also in my feet being on HU for a year, it is unbearable. Along with a very bad knee And the neuropathy it is so miserable.
As for your other question about supplements all I do besides an aspirin is really just dietary. I drink green tea every morning as well as Qtr glass of 100 percent no sugar added Welches grape juice and couple times a week a glass of 100 percent cranberry juice in sparkling water. I use the water because cranberry juice is so tart and also a couple squares of 72 percent or more dark chocolate. Cranberry juice and green tea lowers platelets and helps with protection of stickiness of the platelets. Grape juice thins the blood and keeps heart healthy as well as dark chocolate is heart healthy for the arteries. Your on a lot to thin the blood so maybe avoid the grape juice. My platelets have been normal for 8 months after going off HU. My DR is doing a wait and watch because he knows how HU affected me. I am also very tired during the day but I also have a hard time sleeping each night and I have CKD which is known to disturb sleep. I see my hemo/oncologist in 3 wks so we will see if all is still normal. I admit I still get nervous at each visit as I wait for him to come through the door and announce my result. I was a phlebotomist so I noticed my platelets as far back as my 30's that they at times were so slightly elevated then totally normal as well. I was told there was nothing to worry about because I was do young then somewhere in my fortys I started taking an aspirin everyday just because it was the thing And my parents both had heart issues so I have been on aspirin for many years. As I got older my platelets would be around 500-600 but no Dr ever said anything and I finally pointed it out a couple years ago and then was sent to a Hemo/oncologist and he scared me to death with mentioning HU after other testing. This Dr was so heartless and crude and constantly tried to instill fear in me if I mentioned how sick I was on the medication. I finally got a referral from my PCP for a new Dr and I feel so much more at ease with him. He said down the line I may need to go on something else but for now he is satisfied with everything. I hope the best for you and doing these dietary changes can't hurt you green tea etc is healthy for anyone even without Jak 2 and ET. Take care and good luck. Janet
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@janeto1357
Hello, I was diagnosed with ET/JAK2 in 2023. I was prescribed HU 500 mg and within one month, it flared up severe neuropathy in the feet which was unbearable. I also was diagnosed with CMT, a neurological disease inherited from by father. My hematologist immediately took me off the HU, and since then, put me on Eliquis, a blood thinner, and two 81 mg aspirin twice daily. My platelets are high and so far have stayed 700-800 range. My doctor feels this is ok for now, but may change treatment plan if the platelet continue to climb.
You mentioned you were also taking a natural supplement which has helped you. I’m very interested to know what you take. I do take several supplements and have for many years, but maybe there is something missing that could possibly help.
I’m 72 years old and I experience fatigue but it could be age as well as ET. Are there other symptoms you and others are experiencing from ET itself? Thank you.
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Hug
1 ReactionHi @bobbie1955, Each person’s experience with ET can be unique to them. So it’s important not to compare your medication dosage with that of a friend…though I know how tempting that is! Been there myself. First question, “Am I being over or under medicated?”Right?
Often, doctors will make adjustments to the medication dosages based on blood work and trends in the blood numbers on lab result. Generally they try to give the minimum amount of medication to keep the situation under control. Considering your doctor had you start out slowly and gradually increasing dosages shows they’re keeping track on what may be working better for you. You mentioned that in spite of being on an increased dosage of Hydroxy, your blood numbers are still above normal.
Occasionally, there may come a point when a specific med isn’t quite doing the job as well as hoped and a new medication may be a better fit. At your next consultation with your doctor you’ll be able to talk this over with them.
Hopefully you get a lovely Christmas present of good news. ☺️
Will you please let me know what you find out?
-
Like -
Helpful -
Hug
3 Reactions@lrs1953
You are dealing with a lot -- I am so sorry.
Is it possible for you to walk or do some gentle stretching every day? I find that I have more energy when I exercise a bit.
I'll be honest. Often I have to force myself to get on the treadmill or hop in the pool. But what do you know? After 10 minutes or so, the endorphins kick in and my mood lifts.
Wishing you well.
-
Like -
Helpful -
Hug
1 Reaction@lrs1953 Hi, I got neuropathy also in my feet being on HU for a year, it is unbearable. Along with a very bad knee And the neuropathy it is so miserable.
As for your other question about supplements all I do besides an aspirin is really just dietary. I drink green tea every morning as well as Qtr glass of 100 percent no sugar added Welches grape juice and couple times a week a glass of 100 percent cranberry juice in sparkling water. I use the water because cranberry juice is so tart and also a couple squares of 72 percent or more dark chocolate. Cranberry juice and green tea lowers platelets and helps with protection of stickiness of the platelets. Grape juice thins the blood and keeps heart healthy as well as dark chocolate is heart healthy for the arteries. Your on a lot to thin the blood so maybe avoid the grape juice. My platelets have been normal for 8 months after going off HU. My DR is doing a wait and watch because he knows how HU affected me. I am also very tired during the day but I also have a hard time sleeping each night and I have CKD which is known to disturb sleep. I see my hemo/oncologist in 3 wks so we will see if all is still normal. I admit I still get nervous at each visit as I wait for him to come through the door and announce my result. I was a phlebotomist so I noticed my platelets as far back as my 30's that they at times were so slightly elevated then totally normal as well. I was told there was nothing to worry about because I was do young then somewhere in my fortys I started taking an aspirin everyday just because it was the thing And my parents both had heart issues so I have been on aspirin for many years. As I got older my platelets would be around 500-600 but no Dr ever said anything and I finally pointed it out a couple years ago and then was sent to a Hemo/oncologist and he scared me to death with mentioning HU after other testing. This Dr was so heartless and crude and constantly tried to instill fear in me if I mentioned how sick I was on the medication. I finally got a referral from my PCP for a new Dr and I feel so much more at ease with him. He said down the line I may need to go on something else but for now he is satisfied with everything. I hope the best for you and doing these dietary changes can't hurt you green tea etc is healthy for anyone even without Jak 2 and ET. Take care and good luck. Janet
My food adjustments? Other than lots of water- avoiding the obvious bad foods- I took nattikonase and cayenne pepper.