I was diagnosed 2 months ago with ET jak 2 positive. My platelet levels have been between 480-550. I am in my mid 70s so the dr started me on baby aspirin and hydroxyurea, for two weeks, every other day. Than she increased the dose the next two weeks, to every day (1 tab 500 mg). When I returned after the second two weeks my count had gone from 550 to 500. The dr questioned if I had actually taken the dose everyday as she said it works quickly and I should have been in the 400s. I had not skipped any dosages, but she increased my dosage to every day +2 extra days a week. In other words,9 pills a week. I am wondering whether other people have had an immediate response to bringing the level down further, after only two weeks at 7 pills a week? And why she wanted to immediately go up to 9 pills a week after only being on the 7 pills for two weeks. Since I’m still scared of the drug, although I haven’t had any serious side effectsI’m hesitant to increase it so quickly. I am in otherwise good health, but have been fatigued. ( my platelet levels have been up for the past 18 months, but I was only Dx 2 months ago...I guess the dr was just watching the levels, as they seemed to be goin down a little).
. Thank you for your responses.
Written by
Doggy555
To view profiles and participate in discussions please or .
Mine went from over 900 to 400 in about 8 weeks on 1 per day. I have been on Hydroxy for 7 years and in that time I have fluctuated between 7 per week and 9 per week. I was on 8 for a couple of years and now on 9. Most people on Hydroxy take varying does at times. It doesn’t worry me. I’ve never had any side effects whatever my dose is. I have PV Jac2+
Hi there. It can take a while of trial and error with Hydroxy to get platelets to stabilise at an ideal level. I saw a dramatic drop in the first few weeks (1700 to 900). Then a drop to 600 where it plateaued. The Hydroxy was increased by an extra tablet and then by another. It probably took 18 months or so to get my counts down to completely within normal range.
Is the doctor you see an MPN specialist? It’s really important to be under the care of someone who properly understands the disease. Take care.
Hi Doggy 555. My wife had platelets around 1900, when started on hydroxy, the dose was quite high at the time, and as she was in hospital enduring a major portal vein thrombosis, her blood was tested frequently. The numbers didn't tumble downwards. Anagrelide was added to the mix which did reduce the number of platelets. After about six months of experimental doses, she was on three anagrelide a day and one hydroxy every other day, which she has been on now for well over a year. With platelets around 350 of lower.
Well as far as I acknowledged, platelets do fluctuate, I have just turned 70, was diagnosed ET JAK2 last May when my platelets were 670, taking Hydrea 500mg and clopidergrel 75mg daily, my platelets improved after 2 months, andnd have been within normal range since. Hydrea does take a while to work on our system. I couldn't understand why your dr expected it worked immediately and asked you to take higher dose.
It would be good if you can find a MPN specialist who are specialised in treating our conditions.
Thank you for your reply. The dr sees mostly mpn patients and iconsiders herself a specialist. She was trained in Israel so she had additional info, as well.
I was diagnosed with ET Jak2+ February 2018 at the age of 59 with platelet count of 1k following a mild heart attack. I was immediately put on 500mg of Hydrea every day about 6 months later the count was not coming down fast enough so Dr prescribed 10 pills a week(double dose on M-W-F) and the platelets responded. My platelets now run about 350-400 consistently. I used to go every 3 months for bloodwork and I just went for my first 6 month appt and I have stayed consistent so no need to go every 3 months I, too, was afraid to take it at first(took me 3 days to pop that first pill)! Other than fatigue I have no side affects. Fatigue could be the ET not the Hydrea:/ I am thankful there is a tried and true drug to keep me from having another heart attack or a stroke or pulmonary embolism Wish you the best!
Thank you for sharing your experiences. I wish you the best. This site is very helpful for support. I mostly have muscle fatigue which I try to combat by walking and swimming, But sometimes it feels like I have lead in my muscles.
I'm almost 75 and was diagnosed with ET+CALR 2 4 years ago when my platelets were about double yours. I was put on Hydrea and asprin but it took 6 months for my platelets to reduce to normal levels. During those months, my Hydrea dose was increased from 500g daily or 7 capsules a week to 1000/1500g daily or 18 capsules per week. In those earlier days I was back every 2 weeks until the increased dosage eventually achieved the desired levels around 300.
There is nothing to be scared about as every person is different and the doctors need to gradually increase medicines until the levels are within normal range. I have never had any issues apart from a little fatigue and some hot flushes on my face occasionally when my complexion turns quite red for up to an hour or so - nothing to be concerned about.
My life has not been adversely affected in any way. Its only natural for any of us to be in a state of some anxiety initially but it passes quickly - it certainly did for me!!
Mine went up after my first two weeks at one pill a day. Two pills a day made it drop pretty quickly. Since then we have had to adjust multiple times. I have been trying to find the right dose for over a year now. So it’s okay for it to take some time.
Hi there, hopefully yours will levels will go down by your next appointment. I saw improvement by about 2 weeks and they had come down some by then and to where they should be within about a month. Good luck and health to you! Ann16
I’m 77 , was on 500 mg hydrea every day plus aspirin and count went from 586 to 350 in two weeks. Going for second blood test next week. Hopefully they’re still down.
My platelets started off at 1143, aspirin and Hydroxy eventually took it down to 328 but it took 4 months, I can't remember if I had venesections in-between. The highest dose of Hydroxy I was on was 17 per week... Now on 5 hydroxy plus interferon, no venesection in over 7 months,
Hi, I too was diagnosed aged 64, 5 years ago. I had levels of nearly 1000. Strange as I didn't have any symptoms save from a rash which appeared on lower legs which I was concerned about. This has never disappeared. I now take 3 tablets daily and am lucky that have no adverse reaction though started low. I have never got below 500 still though they are happy with the results. I can tell you I was told at start as I was too scared to take Hydroxy that I would live at least another 15 years, unless something else got me first!! Haematologist is a good person and we do have a laugh.
I can only say try not to be too scared of this drug, I rationalise that not taking it would be far more harmful than taking it. I hope you can carry on a normal life as I do, soon.
I hope your medication/platelet control is going well.
I was diagnosed with ET in Feb 2019, a few months before my 60th birthday (though I may have had the condition for a few years already); the platelet count was then around 700. I was put on Aspirin 75mg EC etc; the platelet count fluctuated up and down but the overall trend was upwards, with levels reaching over 900 by late 2019. In late Jan 2020, with platelet count at about 875, Hydroxycarbamide (HC)/Hydroxyurea chemotherapy was added, starting at 1 x 500mg capsule daily (7 a week). After just under a fortnight platelets were down to 675 or so ... but by late Feb they had shot up to an all-time high for me (since these blood tests began) of over 1000, probably because I had been fighting off a nasty infection (CoViD19 ???) in mid Feb.
My dose of HC was increased to 8 capsules a week and in less than 4 weeks the platelet count fell by around 500 into the low 500s. Since then, it has continued to fall but much more slowly. At the last count (late May) it was 445, which I think is just below the upper limit of the normal range (?).
I wondered if having the platelets come near to the normal range would mean that my HC dose could be reduced but I have been told to stay on 8 capsules a week and have been sent by post a supply for 12 weeks (though I assume there will be further blood tests along the way during that period).
The dose of HC used depends broadly on factors such as body weight, age, etc and is then fine-tuned according to platelet response, etc, with regular monitoring/blood tests.
Hi, I was diagnosed mid 60s when platelets quite high and took Clopidogrel as Aspirin had an adverse affect! along with 7 Hydroxy a week. I don't know about it reducing platelets, I'm now on 21 a week (with no adverse side effects) but this just keeps platelets lowish (mid 500). So would be interested to know how everyone else feels about whether Hydroxy is supposed to reduce platelets?
I too was concerned about taking Hydroxy but really, now have been on for 6 years I would not worry about it. The old adage I use is that perhaps better to take it than risk stroke or whatever???
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
I, too, was afraid to take it at first(took me 3 days to pop that first pill)! Other than fatigue I have no side affects. Fatigue could be the ET not the Hydrea:/ I am thankful there is a tried and true drug to keep me from having another heart attack or a stroke or pulmonary embolism
High platelet count? Anagrelide? Hydroxyurea?
Understanding jump in platelet levels
The Effects of long-term hydroxyurea
Headaches taking Hydroxyurea
Eating Grapefruit while taking Hydroxyurea
