ET: What are acceptable platelet numbers?

I have LGLL, and have been taking cytoxan, for a few months and my platelet count is 59K to 61K, and am wondering if there is a better drug, or something to boost the effectiveness of cytoxan, I take one cytoxan per day at 50mgs and it seems that I can't improve my number.

trustfaith4, I am not an expert on ET but I have have experience with Polycythemia Vera (PV) which is an ugly sister to your ET. We are part of the Myeloproliferative neoplasms (MPN) family. My PV causes my body to produce platlets like a Nascar race car engine. Regarding your question about plateltets. "How much is too much?" I am not a doctor but have spoken to many regarding this same question. I have been told 400 is acceptable and I have heard 420 and several others close to that. Your 500 number sounds high to me but I am just an old 65 year young Kentucky farmer. I am not sure what kind of work you are doing at 72 but for me taking Hydroxyurea 500 once a day has little or no side effects other than getting drowsy at about 5pm which happens to many older people. It is my opinion taking Hydra offsets those nasty blood clots. I wish you the best. J.

I have ET, diagnosed in 2022, and (almost) 72. I have not reached 600-currently at 587(!), but my danger number is 600. I too am concerned with soon needing to go on a drug. I feel tired enough all the time without adding to it. Also, other side effects look really scary to me.
As far as the safe number goes, it may be an individual thing, depending on the Dr and the individual patient. Wishing you the best.

This is just to say that for me (ET, MPL driver, 70 years old), HU gave me my energy back. In the summer of 2023, I could hardly push the lawn mower.

I was diagnosed and started taking HU in October 2023. This summer, I had no trouble mowing. Same heavy lawn mower -- it's my energy level that bounced back.

On HU, I also have fewer debilitating headaches. And although I take 10 500-mg capsules/week, I have no side effects.

I hope you will find a good path forward too.

I have been on Hydrea since 2014 I started out at 1000 mg a day. It works for the most part and I was so terrified to take it. I cried when I took my first dose. But honestly I have had no noticeable side effects! My issue now is that I wish it would work better on my platelets. I’m still less than 600,000 but still waiver around 500,000ish. My issue is I don’t want to increase it more and then lower my other blood counts too much! You are so fortunate to not have to take anything so far, but hopefully you are doing a baby aspirin and hopefully you consider taking at least 500 mg a day. You don’t want to have a thrombotic event. If anyone else is having this issue with Hydrea, please let me know! I truly thought getting all this medication would totally normalize my plate, but that’s not the case. Best wishes!

I started taking Hydrea 500 Mg every other day. I was anxious about taking it so agreed on every other day.
Thankfully, No major side effects other than on the day I take it Fatigue hits hard about
3:00 p m. So, i take a nap and am not real active the rest of the day. So, i adjust my schedule. It has brought my platelet numbers down to 400 which is normal according to my lab reports.
And they move down more each time i have labs. So, it does work for me. I finally decided to try it and see what would happen. I was fearful, but more fearful of blood clots.

@trustfaith4, @janemc
Thank you for your comments. I do feel my first foray into being medicated-other than aspirin-is on the horizon. It’s a daunting thought, and your assurances are appreciated! Best to you, and all on this forum.

Hi, this is my first time writing anything, but I’ve benefitted tremendously from reading the insights shared by others in this group! As others have said, your doctor’s approach will probably depend on many factors. I live in Canada. I was diagnosed with ET about a year ago, having had platelets over 450 since early 2022. My platelet numbers, taken every 4 weeks, currently tend to bounce between 800 and 900. Although I am almost 64 (where did the time go?!), I am just on 81 mg aspirin per day. My hematologist will look at HU if my platelets get to 1,000. I understand that this is because I have fortunately had no clots, am in good health (knock wood) and am triple negative (I have none of the 3 major genetic mutation drivers, so don’t have JAK2). Take care, and best wishes in your health and wellness journey. I hope that my comment is helpful, in showing how some of these factors have affected my hematologist’s approach. Greetings from a winter wonderland, with ~50 cm (~18 inches) of snow!

Welcome, @reneemichelle. What a helpful, first-time post.

What lifestyle activities do you like to do to help lower risk of clots? Any favorite snow activities?

I am 78, years old and have had LGLL, for a couple of years with a platelet count as low as 39, and as high as 61, with current count at 56. Have never had a problem with bleeding accept some under skin buzzing which has stopped appearing completely. Have been taking Cytoxan at 50 mgs daily and now will be changed to 100 mgs. I feel better than my numbers tell me. Has anyone ever heard of someone recovering from this condition? Any other suggestions in raising a low platelet count.