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

Hi everyone, I am newly diagnosed (Fall 2021) and have the JAK2 V617F mutation. In my mid 60's and currently on low dose aspirin and 500 mg Hydrea daily, although at this time my platelets sometimes get a little too low and we have to halt the HU temporarily. The platelets go right back up and I begin the HU...so I'm at the beginning of my ET journey. My hematologist did tell me that she has one other patient with the same diagnosis that has been on HU for over 25 years quite without any major side effects, which calmed any anxiety I had about side effects. So far I only have tingling feet which I believe is one possible symptom of the disorder? My feet have been tingly for many years and no-one could ever tell me why. I just found this group recently. Thanks for all of the positive posts!

Hello, Pumpkin. I'm 85, ET, CALR + and have been taking Hydrea for a little over five years, but just started the switch to Anagrelide. This morning as a matter of fact. The reason for my switch is a small ankle ulcer that has been slow to heal, but is now a week or two away from being cured. At this late date of 37 weeks of wound treatment--there was discussion about calling victory and declare the excellent treatment I received at two separate wound doctor facilities a success--there is little likelihood that Hydra is now much of a factor. It is likely, however, that it did play a major role in the ulcer materializing in the first place. Turns out there is a slight chance that an ulcer will develop in Hydra user very near the five-year mark for those who are taking a gram a day. Mine arrived right on schedule. Had I known about it, I would have requested a smaller dose and shouldered the risk because there doesn't seem to be much evidence to support the '450 platelets or bust' approach of many Hematologists. As to numbers, I've yet to find any trial that establishes a linear relationship between platelet count and circulatory accidents. However, common sense would, of course, suggest that if platelets are the cause of such events, then the more platelets we have, the greater the likelihood of a bad outcome. Over my five-year dance with Hydra, I became a wall flower (COVID didn't help). At any event, the fatigue induced by the Hydra was such that it became harder and harder to get motivated, and I slowly but surely stopped doing things I had done much of my life. The drug I'm switching to, Anagrelide, is, as you likely know, NOT a chemo drug, and I expect to become more active once the transition from Hydra is complete. I pass this along as my experience only, and, if I've read it once I've read it a thousand times, WE ARE ALL DIFFERENT, and react differently to the drugs. So take this with a shaker full of salt and I wish you well.

Well, you sound like a very WISE man, who is young at heart. I thank you so much for sharing your experience with Hydra these past five years. Yes, we are all so different and will react differently to the drug but how nice it is to be able to have this forum in which we can hear from others with ET. I did not know that Anagrelide was not a chemo drug and will look into it further. Meanwhile, I wish you the best in your transition to the drug and hope this will be the panacea you are looking for to bring you back to your former self with much less fatigue. Would love it if you would keep me/us posted on how you are feeling.

My platelets started at 2900 (crazy, I know). I take 1500mg of Hydrea 5 days a week and 1000 twice a week. It was 1500mg daily but my wbc dropped too low (still are low). Platelets are down to 1000 WITH meds. I’m only 53 and yes I do worry about the lifelong relationship with Hydrea. My problem is I also have aVWD (acquired Von Willebrand Disease)… the opposite of many of your fears of clotting. I don’t have the ability to clot. Super counter intuitive. So my fears are if there’s an injury/accident… I will bleed out not to mention the bruising and random bleeding you all have too 🙁
ET (CALR) and aVWD. Good luck to all

Hi, Anno, thank you for your input. Can you tell me what your platelet count was when you started with Hydrea two years ago and what it is now? Glad your hair loss has stabilized. Wishing you the best.

Hi pumpkin1 - the count was around 900,000+, now dropped to just over 400,000.
It tends to fluctuate mildly from one checkup blood to the next, which I have 3 monthly.
As I moved house during the two years my 3 monthly consultations are conducted on Zoom.
The haematologist checks platelets, white and red cell counts plus liver reading.
No dietary restrictions required.
Best wishes for YOUR health - we have years yet to enjoy! AnnO

Great to hear of someone doing well. Cheers. One thing I would say to consider, is how much of a dose of Hydroxyurea a person is on. Personally, my numbers have been up and down. This has resulted in pretty large ‘doses’ of Hydroxyurea. Presently 23x500mg capsules per week. So my concern has been to watch carefully for side effects..hair loss being one etc. 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. Anyway, it is a relief to have the hip looked after as it was about 2 1/2 .. 3 year wait, due to COVID keeping our hospitals too busy etc. Good luck all.

Hi, Eileen, since I, too, was diagnosed this summer with ET JAK2, I would be interested in following your journey and what, if anything, you have decided to do. I had not heard of MPN voice but will check it out. Wishing you the best.

Just Google how to sign up for Healthunlocked.com. My user name is Mirror368. I posted my first question today “Headaches and HU.” You can chat back and forth openly or privately. I find the website extremely interesting. The site originates in England but has participants around the world. Good luck to you also, Eileen

Thank you, Anno, again. Totally agree about the years we have left to enjoy!