Essential Thrombocythemia: Looking for information and support

Glad it's working for you!

A few patients have told me that their hemo's told them not to drink on HU. Don't know if that was an across-the-board guideline, or just an oblique way for doc to put the brake on suspected overimbibing. The liver connection makes sense, though.

When people get infused chemo, they get all kinds of info and tips ahead of time. When MPN patients get HU, docs leave them to learn about it from Dr Google, where info is scary and contradictory. Then the docs wonder why patients won't take it.

To answer your question, my platelet target is just to keep it in the normal range of 150-400. I've just had two consecutive tests where the platelets were in the range (low 300's), and the white blood cell count is also not elevated, so after 10 months it looks like I finally have a good balance. The doctor has extended my next blood test out to 3 months now, as opposed to 6 weeks. As far as how long it took me to respond to the meds, I was down out of the danger zone from 1700 to the 500 range within a couple of months. It just took many more months of finessing to get the platelet count to stay in the normal range and have the white blood cell count not be elevated also. I've stayed in great shape and drink alcohol in moderation, though I noticed I cannot handle it like I used to. Probably due to the Hydroxy's demand on the liver. Before if I had 4 glasses of wine on an occasion it was not that noticeable, but nowadays I would be plowed drinking that much in a setting.

Thank you for this! It is reassuring to know that this happens, but that at least I am on the right track. Really appreciate your response. < 3

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.

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

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)

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!

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.

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?

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.