Hi all,
My platelets have been slowly on the rise, currently 660. .I am on Hydroxycarbomide, 500mg for 6 days and 1000mg on the 7th. I am not able to increase this as my neutrophils drop below 1. They are currently at 1.2. There has been talk of changing to anagrelide. Has anyone else experienced this, or changed medication? I would appreciate any thoughts or personal experiences with the above.
Thanks and have a lovely weekend
Penny
Anagrelide was the first treatment I was on from 2001 to 2003. After a few weeks of side effects (headaches and palpitations) I did very well on it.
Thank you for your reply. Just so worried about the added side effects and a full time job.
If PLT is your main problem, you could see whether your location and condition qualify for the Bomedemstat trial and discuss with your Dr if so. It is good for PLT control with reasonable side effects in the trial so far. Some members here are in the trial.
I'm on.both at present as like yourself I had low neutrophils ..I began on 2 HU and 2 angralide... then 4 ..and it was very effective really reduced my platelets down to 600 . After 2 yrs on this I'm.now on 1 HU and 4 angralide ..some times 6 then.back down to 4 ..my platelets are in the 300 range and have been.very steady for 18 months .I found side effects were a few more headaches and a few palpations but i found by splitting the dose not taking 2 angralide together and drinking water to be the answer . I drink 3 litres a day and I feel it if I don't. My haemoglobin levels are better and my neutrophils recovered to 2.1 . It's not for everyone and everyone is different .Im monitored every 3 months now .. I was concerned about taking angralide due to things I read about. But it's been a game changer for me at present.
Wishing you well
I was started off on HU for about 6 years, then on Aspirin only for about 10 years and now on Anagrelide. I haven't had problems on either but consider alternative medication options now as been on Anagrelide over 12 years. Good luck with your journey.
Thank you
I started on HU but was really affecting me really bad fatigue and my red and white cells were getting lower. Eventually moved to anagralide, best thing less sideaffects. The first couple of weeks had headaches but now fine. Was best for me but everyone is diff.
Hello! I started anagrelide a year ago (first time on medication) and had two days of splitting headaches and a few weeks w heart palpitations. But after that - nothing. So don’t worry too much about side effects and start on lowest dose possible is my advice. I will be switching to interferon in about a year as I’m “only” 45 and interferon has better promise for not progressing etc. But I live abroad for now so it’s just easier with pills. Anagrelide has made all my numbers normal so guess I highly recommend it 
Just gone back onto anagelide after 20 months on HU. Prior to that I was on anagelude for 14 years, successfully. HU didn't work for me and my blood count never came down to an acceptable level. Feel better already going back to anagelide as had awful side effects on HU so hope my blood count shows results when next checked
UKZA my wife switched off of HU to Anagrelide because of concerns from long term use of HU. Although she tolerated Anagrelide better than her oncologist expected it wasn't lowering her 1+ million platelet count. With her oncologist's approval she used 50mg of red palm tocotrienol twice a day. Whether it alone or in combination with the medication the platelet count began coming down and as it did the oncologist reduced the medication accordingly until the count was in the normal range.
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