Essential Thrombocytosis: Do platelets ever decrease without meds?

Posted by sunnylane @sunnylane, Jun 29 7:52pm

I am 72 and have essential thrombocytosis, calreticulin positive, asymptomatic with a platelet count of 848. If it goes much higher doctor will prescribe Hydrea. I have been taking 720 mg of 100% allicin garlic and platelet levels have remained under 900. I just started to drink 100% pure cranberry juice, because I read that it will reduce platelet levels. I read that Hydrea has a lot of bad side effects. Questions: Will my platelet levels ever decrease on their own without medication? Are there any other things I should try to reduce my platelets? How did the error in mutations occur to cause platelets to increase? Thanks!

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Profile picture for 1995victoria @1995victoria

@garyr443
ET affects approximately 1 to 24 individuals per million globally.
In the United States, the incidence is estimated at 0.6 to 2.5 cases per 100,000 people annually.
The condition is more commonly diagnosed in adults, particularly those around 60 years old, but it can also occur in younger individuals.

This rarity contributes to challenges in diagnosis and treatment, as many healthcare providers may not be familiar with the condition

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@1995victoria That explains why my doctor, when I was 52, didn't know what to say or do about it.

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Profile picture for mmkennedy @mmkennedy

I have ET with the MPL mutation. I've read that the mutations are due to environmental exposures from a variety of known and unknown exposures (e.g. x-rays, chemicals, et cetera). My platelets were high for the past 25 plus years and I was on active watch but nothing was done until the count started increasing to the high 600's then 700's to 800s and high 900's, They were relatively steady for much of that time in my 30's to my 50"s. But now at 64 suddenly they are a problem where in a few months they jumped from mid 700's to 981.

I was having alot of symptoms that were related to ET that I wasn't aware were caused by it. I was incredibly lethargic and could not get myself going and I 'd wake up with very bad headaches that debilitated me for much of the day. I didn't understand why this was happening; was I not drinking enough water? Was I depressed (causing the lack of energy)?

After getting put on Hydrea, my platelets started dropping, I regained energy and wasn't having headaches as much. So hydrea was liberating for me. With hydrea, I notice that I need to drink more water, my skin always feels very dry. I am also taking iron and I don't know if it is just the iron or maybe the Hydrea also - give me constipatio which I have to manage. My first hematologist told me that no food can help to reduce my platelets as I had read that blueberries could help reduce platelets - but after hearing that, I dropped the effort.

Good luck to you

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@mmkennedy This reminds me of my exposure to photo processing chemicals while I was in the Air Force in the early seventies. These chemicals caused my skin to dry out, break open and bleed and more of the chemicals infiltrated my wounds. A life-long result of this has been constant itching over much of my body. I was told I was lucky I didn't get cancer. Well, in hindsight, I did...just much later.

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Profile picture for mmkennedy @mmkennedy

I have ET with the MPL mutation. I've read that the mutations are due to environmental exposures from a variety of known and unknown exposures (e.g. x-rays, chemicals, et cetera). My platelets were high for the past 25 plus years and I was on active watch but nothing was done until the count started increasing to the high 600's then 700's to 800s and high 900's, They were relatively steady for much of that time in my 30's to my 50"s. But now at 64 suddenly they are a problem where in a few months they jumped from mid 700's to 981.

I was having alot of symptoms that were related to ET that I wasn't aware were caused by it. I was incredibly lethargic and could not get myself going and I 'd wake up with very bad headaches that debilitated me for much of the day. I didn't understand why this was happening; was I not drinking enough water? Was I depressed (causing the lack of energy)?

After getting put on Hydrea, my platelets started dropping, I regained energy and wasn't having headaches as much. So hydrea was liberating for me. With hydrea, I notice that I need to drink more water, my skin always feels very dry. I am also taking iron and I don't know if it is just the iron or maybe the Hydrea also - give me constipatio which I have to manage. My first hematologist told me that no food can help to reduce my platelets as I had read that blueberries could help reduce platelets - but after hearing that, I dropped the effort.

Good luck to you

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@mmkennedy Similar story to yours. I grew up in the 1950s/60s near a chemical plant. Too many people at my 50th class reunion with blood cancers for me to think it's a coincidence.

The HU helped with symptoms at first. Been on it x 8 years. I also have constipation. Certain yoga exercises + water + more fiber help.

I am supposed to have cardiac surgery and have to go off HU for two weeks prior. So if that goes thru, we'll see how I feel off HU.

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Profile picture for 1995victoria @1995victoria

@garyr443
ET affects approximately 1 to 24 individuals per million globally.
In the United States, the incidence is estimated at 0.6 to 2.5 cases per 100,000 people annually.
The condition is more commonly diagnosed in adults, particularly those around 60 years old, but it can also occur in younger individuals.

This rarity contributes to challenges in diagnosis and treatment, as many healthcare providers may not be familiar with the condition

Jump to this post

@1995victoria Okay, then, fairly rare.

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In my case, a month of substituting cranberry juice for Hydroxyurea (another name for Hydrea) resulted in my platelet count increasing. So, I have gone back to Hydroxyurea. I can't say whether cranberry juice might work for others, though. I just don't know.

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Profile picture for nohrt4me (Jean) @nohrt4me

@mmkennedy Similar story to yours. I grew up in the 1950s/60s near a chemical plant. Too many people at my 50th class reunion with blood cancers for me to think it's a coincidence.

The HU helped with symptoms at first. Been on it x 8 years. I also have constipation. Certain yoga exercises + water + more fiber help.

I am supposed to have cardiac surgery and have to go off HU for two weeks prior. So if that goes thru, we'll see how I feel off HU.

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@nohrt4me

All of the best with your cardiac surgery!

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Would donating platelets at the Red Cross 4 times a year lower platelets enough so you would not have to take Hydroxyurea? Can you donate only platelets and not red and white blood cells? Thanks!

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I also have ET, also with MPL mutation.
I have been on Pegasys Interferon injections for maybe a couple of years, now a very low dose monthly.
My platelets quickly came down when I started Peg, these days they are steady in the 300’s. I no longer think much about it to be honest.
Mind you, I am recently diagnosed with dementia, at 67. That has been another huge blow and no doubt will not be manageable at some point. Currently fine and hoping for another few good years. I would be grateful for any strategies/diet/exercise programs etc that have benefited others in this position.
Also any useful hand exercises for encroaching hand arthritis.
Thanks for reading.
Jacqueline

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Profile picture for sunnylane @sunnylane

Would donating platelets at the Red Cross 4 times a year lower platelets enough so you would not have to take Hydroxyurea? Can you donate only platelets and not red and white blood cells? Thanks!

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@sunnylane Interesting how often this question comes up. Sadly, no and no. Red Cross does not want and will not take blood from ET patients; they want healthy blood. And donating might reduce platelets for a matter of days only.

Some PV patients get plateletpheresis (siphoning off excess platelets and rest of cells returned) monthly or more. But this is time-consuming and unpleasant. Most patients prefer a pharmaceutical treatment to that.

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Frankly, I can't believe your doctor hasn't already prescribed Hydrea (Hydroxyurea). When my hematologist first prescribed Hydroxyurea for me, the objective was to keep my platelet count below 400,000.

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