Essential Thrombocythemia: Making treatment decisions

@appraiser1946
I have been on Anagrelide for over 5 years now after being on HU for 18 years and developed a very bad case of skin cancer.
I have no problems with it at all. It is best used by those who have no heart issues. I experienced some palpitations in the beginning
But those subsided after my body adjusted. My hair is now thicker and my energy level is just fine. I have less side affects with this drug than HU. I also take a baby aspirin daily. Hope that helps you 😊

@nancyra
There are heart issues on both sides of my family and l told my doctor no way no how. The HU is effecting my red and white blood cells, hemoglobin etc. I’m going to a specialist that deals with blood issues. If he says the same thing then l am heading to MD Anderson.
There has to be a way to receive a lower dosage then 500mg. I take 3 times a week and if l take more then everything goes down. My platelets are at 714 now. I don’t want to take a drug that causes me to take another drug. 😔 The Anagrelide is a big no. My ticker is not to be played with at all.

@lynnebgraham

Did you not worry about heart issues?

@lynnebgraham We must be related! Same age range, same weird ailments, same voice, both with husband named David.

Take care and keep us posted on the surgery.

@kik1 I saw my new specialist at Hollman Clinic, Launceston Hospital in Tasmania, she told me that Anagrelide was no longer available on the PBS and not recommended due to heart issues. I was not previously informed of problems by my haematologist, I was on it for many years and had no problems. I will be staying on the HU as it is helping to lower my platelets, slowly but steadily. Apparently Anagrelide works very fast to get them down, but is not good for the heart. Would have a good conversation with your doctor about Anagrelide.

@nohrt4me Hi Jean, well went to new Dr. She said I am a very, very, rare person. She explained that all the tests that they did when I had my bone marrow tested, every test came back negative. No matches to any mutations. She is very interested to see if when I have my thyroid operation, the platelets behave differently. She said my problems with thyroid, could be one explanation. Still on HU.

@lynnebgraham Wow, that would be a whole new twist if thyroid surgery affects your platelets! Do you have a date for your operation, yet? I am grateful you are keeping us posted!

I'd had high platelets for a couple of years, reaching 803k, and finally found a good hematologist who explained my bone marrow was producing too many platelets which would lead to stroke and heart attack. He suggested a low dose aspirin, which I was already on, and HU (hydroxyurea), starting with a low dose of 500 mg a day.

I was freaked out at first by this med, as most people seem to be. I took it and my platelets dropped to 557 in 3 weeks, so I was encouraged, but realized we had a ways to go to get into the normal range. I felt a little off for the first week, light headaches, but those disappeared after that. But I was worried my doctor might double the dose, leaving me more open to side effects.

I decided I needed to make friends with the med because it was the primary med to help my condition and I could afford it. I thanked the med as I took it, I thanked my body for processing the med, and I asked my bone marrow to make just 380k platelets for the next blood draw. That draw showed 378k platelets!! Thank you, body!

Since then I've had a 317k reading and am awaiting my latest test results. I monitor all my blood readings. I am thankful there is an answer to my problem.

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.