Starting 17th year with ET. What's ahead?

I didn't have a choice, I was out of my Agralyn and had appointment with my haematologist who had disappeared. Luckily got appointment with new one, who put me on Hydrae. He was astounded that in 16 years I had never had a Bone Marrow test done. Hopefully now all will settle down again 🤞🤞

I just learned of my ET diagnosis and need for hydra and aspirin for life yesterday. I was not expecting all this to come from a routine blood test! My platelets were retested and down about 25% from first lab taking nothing, but I guess they are still too high so I am supposed to get treatment with those meds now. I am not looking forward to it. How does it make you feel? I read someone had to give up bike riding and that would be terrible as I bike ride with Mr daughter and sister at least five times per week. I don’t want to give that up. I had no diagnosed conditions before this and feel just fine, but I am 65 now.

Welcome to Connect, @1pearl. That diagnosis out of the blue had to really hit you like a ton of bricks! Having a platelet level considerably higher than normal has the potential for risk of stroke or blood clots. Hydroxyurea is a medication that is used by people whose bone marrow is producing too many of a specific type of blood cells. In your case it is too many platelets. The low dose aspirin, taken daily, acts as a blood thinner to keep platelets from sticking together and forming blood clots.

You mentioned the level dropped 25% from the first labs.
If you wouldn’t mind sharing a little more about your experience, I’m curious about how high was your first reading? Are you seeing a hematologist for your diagnosis?
Were you ill with a virus or other infection in the weeks before your first set of labs?
How much time was between the first and 2nd set of labs?

I had to give up bike riding due to dizziness. I don't know if this is related to ET. I have had ET x 16 years and on hydroxyurea x 6 years. I am 70. If you aren' t dizzy, bike riding is good for your mental outlook and your circulation. Enjoy your cycling!

Thank you for your reply. It was reassuring to hear that I may be able to bike ride just fine.
Have a great weekend!

Thanks for your reply. My first lab was 12/16/24 and level was 1255000 and 1/10/25 was 988000. I just saw the hemotologist/oncologist yesterday. Yes, I was sick with a sore throat the weeks before my first lab. I was very sick with what seemed like a bad cough, sore throat, and cold on a family vacation to Switzerland in mid July and it took at least six weeks to recover from that. Prior to that, I had not been sick with anything for years! So yes, this new diagnosis is very stressful.

The HU should help to bring down the high platelet level to a more normal level. Your hematologist will moniter your blood work carefully to see if it’s working for you. The reason I asked about infections is that can sometimes cause a temporary elevation of platelets. When you mentioned your numbers were found on a routine blood test, my concern is that your primary care physican was prescribing the HU. Having a hematologist on board is important. ☺️

We have quite a few members who take HU and have for years. Most people seem to tolerate it very well with many side effects. Here’s a link to a current discussion with other ET members and their experiences. https://connect.mayoclinic.org/discussion/jac2mutation/?commentsorder=newest&pg=1#chv4-comment-stream-header

It can be helpful to find the underlying cause of the elevation though. ET (essential thrombocythemia) is one of a group of blood disorders (myeloprolific neoplasms) that can be caused by an acquired mutation to a gene which controls production of blood cells, such as JAK2. Did you have any genetic testing done?

Hi Lori,
Yes, I had JAK test and negative. I think they ordered more tests that are not back yet as take more time. I do have an enlarged proximal phanangeal right ring finger joint and sternoclavical joint with no pain but deformed bone but never really determined cause but I have not had injuries or falls to cause them. I did have hand MRI saying to rule out inflammation/infection which was never done. I have negative rheumatoid factor from lab and no psoriasis. I might be able to get a new hand MRI to compare but Hydrea and aspirin is recommended for life now. Hand specialist I saw for first issue in 2023 was pretty useless and did know what I have from the MRI and wanted to do exploratory surgery which I declined. Difficult to get second opinion and rheumatologist did not know what it is either. Mostly frustrated appointments with docs I must say.

"Frustrated" is how lots of us feel when we develop complicated health issues.

Answers don't come easily.

You are doing everything right: Seeing a hematologist/oncologist, getting tests, and while awaiting further explanations, protecting yourself by taking HU and aspirin.

Having a blood issue you probably didn't even know was possible can make you feel really alone. In this forum, though, you're among friends. We've all been through it. We're here for you.

My wife was diagnosed with ET/Jak2 in the summer of 2024. She's been on Hydrea since then. 1000mg 3 times /week and 500mg 4 days a week. No side affects at all. She's has run many marathons and completed many triathlons in her lifetime but is now retired from those competitions. However, she is still very active at the age of 72. Indoor cycling for now (we live in New England), hiking, aerobic classes and more with no dizziness at all. We'll be on our bikes cycling again as soon as the winter is over. She was biking in the fall with no issues last year. At least for her, the Hydrea has not slowed her down or affected her life at all! Yay!
Good luck to you,
Steve