People living with ET and taking Hydrea: Anybody setting records?

I have am 69 yo and been living with ET for 21 years.I have been on Hydrea and aspirin for 9 years. I am doing well. My platelets range around 600,000- 800,000. I cannot seem to get them below 550,000 without lowering all the other blood cells to a dangerously low level. I take hydrea 1,000 milligrams 4 days a week and 1,500 3 days a week. I do get tired but I just rest and read or watch movies and try to enjoy life. I walk and do yoga but I am thinking of adding swimming a couple of days a week. I am glad you are at the 30 year mark. I really have to follow all the best advise given in order to live well. For example, my body, mind and liver will not tolerate any alcohol, I have to drink at least 90 ounces of water per day, I need to exercise, I need to stay calm and centered and continue in therapy, I need to eat well and avoid gluten, and sugar and keep the dairy to a minimum. If I do these things I do not suffer as badly from pain, numbness, headaches and many other strange symptoms. It gives me hope that you are doing so well at 30 years. Thanks for posting. I wish you all the best.

Finding a balance between medications and their side effects can sure be challenging. I’m sorry to hear you’re so fatigued with taking Hydroxurea at the recommended dosage. I know right now you don’t have a choice because of the upcoming surgery. Your surgeon doesn’t want you to experience any blood clotting so it’s important to get your platelet level down to a healthy limit.
After surgery and recovery, maybe you can speak with your hematologist about adjusting your dosage to a different schedule? I know some members have mentioned their doctors have allowed them do something like alternate 1 pill per day/2 pills per day. Or 1 pill daily but twice per week they add the extra pill. It can minimize the side effects but also maintain a healthy platelet level.
In the meantime I hope your numbers get to a happy spot so that you can go ahead with your surgery! Do you have a target date for surgery?

so true about the blood work comment. My physician likes to check the platelet count and seems to ignore the fact that I am anemic. He does routinely check my metabolic counts and iron but I get frustrated trying to tell him that I am not interested in being so tired that I cant go about my life.

I have been living with ET since my 50's, I am now 72. I didn't start taking any meds until I turned 60, as I was told this was a risk factor for stroke and blood clots. I have been taking hydroxyurea with an aspirin for 12 years. I am supposed to take 2 500MG capsules every day but I only take 1 as I cannot take the fatigue, drives my hematologist crazy! I have managed to live an active life without limitations until recently.

I am in otherwise good health but have recently had a hernia which I want repaired. It has now turned into an event as my platlet count with the 1 capsule of urea was 963. Surgeon won't proceed until count is under 500. So I am now on 3 capsules per day for the next few weeks. I am so tired I can't function.

Stands for transient ischemic attack. Sometimes called mini strokes. They mimic stroke symptoms but resolve quickly and may be precursors to strokes: https://www.mayoclinic.org/diseases-conditions/transient-ischemic-attack/symptoms-causes/syc-20355679

What is TIAs?

Diagnosed 11/19/2022 and started the med. The hematologist was watching the platelet level for the past 5 years. Red platelets reached 915 in November. I’m 68 years old I go to the gym daily and work per diem as a social worker.

When were you diagnosed? How old were you? I remember worrying about the safety of the HU, but when I quit HU and experienced a TIA, I came to peace with it and decided the HU was safer for me than going without. After that, I made a conscious choice to quit the worrying and constant research and just live life. In fact, I don't even think about it anymore after 30 years. Depending on how long you've been on the HU, I would wonder how much anxiety creates your symptoms, as anxiety definitely takes a physical toll. It's hard to say if it's the disease or the meds causing the symptoms. But I'd like to know more about your journey!

"At 82 yes I would like to keep other parts of me as healthy as possible.
(also, recently had hip replacement surgery so have been recovering from that, with Physio etc) I think that is probably the case with most of us, that the Essential Thrombocythemia is not the only thing going on. "

Very true. I have severe scoliosis (congenital spinal curvature) that causes nerve tingles, and a bad heart valve that causes dizziness. These are also symptoms of ET. I presume the migraines w flashing lights and fatigue are ET symptoms. These are better since I started HU.

Encouraged to hear you had major surgery with ET while taking HU. A mitral valve repair is in my near future. They are talking open-heart surgery, but I am hoping to make it to 70 (I'm 68) so I can have the trans cath procedure. Quicker recovery time, which would be much easier on my back. Given that the back problem will worsen with time, I'm less about living a long time than maximizing the quality of my time.

I’m just so worried about “what are my platelet levels” is the medicine safe. I don’t want to have a stroke. I’m often fatigued, headache and nauseous. It’s scary