Stabilising platelets

Hello, hope you are all well.

I've been on HU for two years and my platelets have never really kept stable for more than 6 weeks and when they were stable my wbc count fell low and HU dosages were altered . I have read posts where some of you have been stable with normal counts for a few years and only visit the heamotologist every three or four months . I'm just wondering why mine won't settle as it seems a long time and if any of you have the same problem . My heamotologist doesn't seem to think it's abnormal and I did mention a change of medication but she said interferon has side effects and she isn't keen on it and I know I can't have anagrelide due to a heart defect . I'm due to go in April and I feel like my platelets are high again so was wondering if anyone has any ideas .... Thankyou

I

8 Replies

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  • Sounds similar to me when I had PV - if my whites were up my platelets went down. I ended up getting blood tests at my GP alternate to seeing my haem consultant - the results came back to me and I adjusted the amount of HU I took. So then I went to the haem less often.

  • Thankyou Jayne . I did ask my haem if I could have bloods done at my doctors but she said no as she would want to see the results and then make an appointment with her to alter my meds and it's too long winded

  • I was on HU for 10 years and my counts went up and down all the time - they called it paddling- only when they continued to rise in a trend did they increase the dosage. My white counts were low when stable and I had to be careful of catching colds and flu etc.

  • Thankyou. I do tend to worry about infections etc . Never heard of paddling but that's a good word for it

  • Hi. You don't say what sort of levels your platelets are at but despite increasing amounts of HU mine never got to normal levels and fluctuated a lot. As has been mentioned, it's the overall trend that is important.

  • Thankyou... They fluctuate between 500 and 700 and I do suffer with headaches and fatigue when they are higher .compared with some it's not too high but I'm 63 with other health issues and the haem wants it to at least 450

  • Hi Stargazer,

    I have had Et for 20 odd years now and I am still checked every 6 to 8 weeks . I started with nearly 18 x 500 tablets a week and am now down to 10 one week and 11 the next if I go to 11 , 11 it makes my platelets too low and they dipped to 180 and I did have some problems with anal bleeding. So I think you should be checked more often , my gp surgery takes the bloods samples and I have a telephone consultation with my haematologist co its not to difficult. Hope this helps HU is powerful and too much or too little will shift blood counts quickly . It often takes a year or so to stabilise and it can still drift about.

    all the best Town crier

  • Thankyou catkins polymer . Unfortunately my hospital doesn't do telephone consultations or let my GPs do bloods and I have to travel some way to the hospital every time for a check up

    20 years is a long time with et and your coping well by the sound of it , I'm grateful for your input and hope to cope better too

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