Essential Thrombocythemia: Making treatment decisions

Toe pain: People with ET may be more likely to develop gout. It's thought that the gout could be related to the inflammatory nature of ET. Gout usually affects the big toes and can be very painful. My hemo runs an EFGR test with the rest of my blood counts to monitor kidney function. It's never been off, but something to ask about.

After taking a total of 24 Hydroxyurea 500 mg pills every other day since April 3, my platelets are back to normal, 370 down from 550. I see you are using the system to count your value of 1,183,000 where as in my counting system I have dropped 000. Thus the vast difference.

You say you are low risk maybe because of your younger age of 50 so I would not know how you could or could not be susceptible to the blood clots and bleeding characterized by ET. You say your platelets are still climbing and you may consider trying Hydroxyurea. My doctor told me that she doesn't worry until the counts go over 1M. Most of the fellow posters we read here on Mayo Connect have platelets under 1M, but many are older and are being treated with Hydroxyurea or other drugs besides aspirin. In some cases there are reported side effects which are more likely with higher doses of the drug.

In my case, I have no side effects and 1 pill every other day is considered a low dose. The typical medical treatment goal is to reduce the platelet count to help prevent blood clots, bleeding and bruising, and sometimes organ damage. The drug is very inexpensive, $7.25 for a 90 day supply , in my case 45 pills.

Your doctor's treatment goal with aspirin may be to reduce the chances of having a blood clot and not reducing the platelets. From my reading and my own experience, I am satisfied taking Hydroxyurea. And it has worked to lower my platelets in a short period of time, with no side effects, and is very inexpensive.

Hope this helps.

Happy Memorial Day !

Thanks for your informative post. May I ask you age? I am 75 and was diagnosed 4/30/25 with a platelete count of 553. I'm on baby aspirin right now. Hoping my next blood test in July will show my levels did not increase. Fingers crossed.
Happy Memorial Day!

Hi @pamandsandy,

Platelets can fluctuate without doing anything I know from my own experience. Mine went down by 400 from one lab to the next one month apart. It really does seem like a numbers game as docs like to treat high platelets. Please report back what yours do on after your next lab in July.
Happy Memorial Day Weekend to you too!

Hi....
Thanks for your response. I'm knew to this ET thingy. So, do you get monthly tests? My doc said to get tested every 3 months. Are you just on baby aspirin or...? And, when were you diagnosed?
I have so much to learn about this. It was scary at first to get the diagnosis (my doc was very positive, kind and informative), but the more I learn and read here I feeling I can actually live with this.

Happy Memorial Day to you, too.

I take a low dose aspirin and hydroxyurea 500mg once a day with no side effects. 🙏

I was diagnosed at age 60, but onset of high platelets about age 54. Just on baby aspirin x 3 years because no clots + CALR mutation = lower clot risk. Platelets gradually rose from 600s to near 800, and then started hydroxyurea once a day.

Now age 70 and doing ok with the ET. My dad also had ET. So feel free to ask questions here. Some of us have had this quite awhile and are part if the mysterious family clusters with ET.

Take good care of yourself. When I slack off, I am a trial to myself and others.

PS, I get blood tests every 3 months, but doc may want them more frequently if you start meds.

Thanks for all the comments. I guess I should have added I have a positive JAX2 test which puts me in the higher risk category. Anyone else here had a JAX2+ test?

I also have ET JAK2 diagnosed in June 2023 at age 72. Platelets were higher than normal for many years and doctors ignored because only 460-525. In 2017 was contemplating spinal surgery so went to hemo/oncologist and was given genetic testing but negative for MPN mutations but positive for Leiden Factor V. I didn't have surgery and again nothing done about platelets.
Then I was feeling fatigue and just off since having 3 covid vaccines in 2021 so went back to hemo/oncologist in 2023 because platelets were increasing to 600s. This time, I was JAK2 positive so diagnosed with ET. I had been taking 1 baby aspirin for 15 years so continued that daily dosage. I was not given any other meds for the ET even though at age 73 now I'm considered high risk. My oncologist wants to wait until platelets are over a million to start HU. But he did say with my Factor V blood disorder he will consider starting HU at 800 platelets. My last 3 month test was 673 so I'm just worrying, waiting and fatigued. My mother died from blood clots at age 56 after surgery but we didn't know that she obviously had ET until I was diagnosed. I have no history of blood clots but taking meds for high blood pressure and high cholesterol which are both controlled by meds. Wow, I need to print this for my medical records and show the oncologist next week.

I'm so grateful for all the information. I feel I can have a good conversation with my doc at my next appointment. I'm also on meds for high BP and high cholesterol. At this point I'm symptom free...hope I stay that way for a long time taking the baby aspirin! Take care.