Essential Thrombocytosis: Do platelets ever decrease without meds?
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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@1995victoria That explains why my doctor, when I was 52, didn't know what to say or do about it.
@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.
@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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4 Reactions@1995victoria Okay, then, fairly rare.
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.
@nohrt4me
All of the best with your cardiac surgery!
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1 ReactionWould 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!
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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3 Reactions@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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3 ReactionsFrankly, 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.