Essential Thrombocythemia: Looking for information and support

Your idea of jotting down notes about reactions, foods, activities with a new illness or meds is such a great idea. And I really do believe it helps when we can give those findings to our doctors. Helps keep us on task in those limited appointments.
I hear you with the dismissal we get sometimes for being a ‘women of age’. I’m saddened that you’re feeling even more-so for being a woman of color. We are all entitled to be heard! And we didn’t get to be this old by being stupid.
I hate feeling patronized or the condescending tones when having a conversation in certain settings. My primary care physician was so dismissive 4 years ago when I went in to her office 3 weeks in a row with worsening symptoms of a horrible cough, weakness, sustained fever of 102. Kept telling me I had nothing more than bronchitis. I finally told her that ‘Look, I’m 65 and have never been this sick in my life…it’s not bronchitis!”
The 3rd appointment my husband literally carried me into the office and insisted on blood work and a chest X-ray. Which I got…pneumonia and a diagnosis that afternoon of acute myeloid leukemia. I was rushed to the hospital and there for 5 weeks the first round. 8 weeks total with subsequent rounds of chemo and then 4 months in Rochester for a bone marrow transplant. I told her I was sick! 😅. What I do wish is that every medical facility could be as respectful and patient oriented as Mayo. They spoil us for anything else.
My new local PCP is great and seems to take me seriously. I hope subsequent generations of women get the respect they deserve…lord knows we’ve tried, huh? ☺️

I am not a person of color, but I have heard this from fellow patients who are. There was a push a few years ago to try to emcourage more patients of color to participate in MPN drug trial groups, but it is a hard sell.

Just joining Mayo group. I've lived with ET for over two decades, given Anagrelide when it was new (I think...Agrylin) and that manages the platelet count. At 72, greater awareness of physical changes so...I'll keep watching the posts for new news!

Yep, if I don't want to risk those high platelet numbers, I take the medication daily, see the hematologist as needed (was down to annual, back to semi-annual due to age, I think). At 72, I've been on Anagrelide with the exception of a few months when provider changed after 10 successful years. The hyrea was NOT for me, lots of trouble stabilizing blood numbers across the board. New search brought me back to what had worked and still works. No symptoms.

Welcome to Mayo Connect @docoltun. Thank you for sharing your experience with ET and what’s been working for you to keep your platelet level managed with Anagrelide. It’s always encouraging for others with essential thrombocythemia to hear a positive story from someone who’s had this blood condition for many years and doing well!
How long were your taking Hydroxyurea before it was switched to the Anagrelide? What were your side effects?

OMG, my medical plan changed so I lost my hematologist after 10 years on Anagrelide. New guy was SHOCKED, said I should definitely be switched to hydroxyurea and attempted a very lengthy, painful bone marrow biopsy which ultimately provided nothing unusual. Biopsy had never been done since the Agrylin (pre-generic anagrelide, may have been brand new) did the trick lowering platelets from 1800+ to below 400 quickly. So after five pokes (I remember asking if he'd ever done this procedure on a live person) my medication was switched awaiting results. A nightmarish 6 weeks of weekly out of control blood draw results. Took me that long to get approval for a DIFFERENT provider who basically said, if it works, why change it? So...I'm probably heading to 25+ years without symptoms from ET. I may have been an anomaly with the hydroxyurea, impatient since there hadn't been any symptoms or might have been an over enthusiastic new doctor. Thanks for asking.

That’s quite the story and you had me cringing with the BMB experience!! I’ve had 13 of those and I admit, after the first 3, the rest all were under sedation. 😅 As for your meds, I agree…if it’s works why change it! I’m so happy to hear that you’re having no issues and the meds are continuing to work! Very inspiring!

I have received my results from my blood tests after 4 weeks on 500 mg. of Hydroxyurea. The first week went from 891 to 790 then down to 689 but the latest result was an increase to 700. I had another blood test done today (being done every week) but won't know the result for a while. Do you think I should be concerned about the elevation? Is this just a fluke, or am I becoming accustomed to the drug, and it is no longer going to be effective, at least at this level? I know these are questions for my haematologist, but I hope maybe there is some anecdotal evidence that you might be able to share with me. (I have no appointment until October.....but should I call? I don't know)

Thank you for your encouraging post. My hematologist has suggested I switch from HU to Anagrelide because of headaches. I have been hesitant because I have AFib and some have palpitations taking it. I just had a stress test and echocardiogram with normal results so your experience helps me decide to try it,

Thank you, Eileen

Counts will fluctuate, but your counts are trending down, and that's what they look at. It took me a year to go from 800s to 500s, and there were fluctuations like yours. The second year, three extra caps/week were added, and I have stayed almost consistently in the 400s for five years.

Call the doc if you are worried, but 689 to 700 is only about a 10-point rise. Mine fluctuate regularly between 425 and 525.

It's nerve racking, I know. Hang in there.