Starting Hydroxyurea

As my platlets currently 908 have been slowly rising have been told I should start on Hydroxyurea. I'm 45 in good condition and don't really have any symptoms apart from feeling occasionally lightheaded. I'm just worried that this is going to introduce more problems than I currently have. I know it's generally well tolerated but is this the only option for my age and risk group?

Thanks in advance.

25 Replies

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  • We're all different but I stayed on aspirin only from age 47 to 60 with platelets ranging between 600 and about 900 over that time. My doctors suggested that 1500 rather than 1000 was a realistic trigger point for other treatment while under 60, so long as no other risk factors were present.

    If you do start treatment I suggest exploring other options such as Pegasys as alternatives to HU - I opted for Pegasys and it's working very well for me with no significant side effects.

    Good luck..!

    Andy

  • Thanks Andy.

  • Just wondering Andy if Pegasys is available on the NHS or is it part of a trial? Thanks for your input.

  • I want to change to Pegasys if we ever get it in Australia - only because of the slight chance of conversion to AML after around 11or 12 years with hydrea.In fact Surely we will get within another 3 to 4 years and that would be a good time to change . Il only have been oni it 7 years by then.

  • Pegasys is available on the NHS but it seems to be more easily available in some areas than others - possibly due to lack of familiarity in some consultants and possibly due to cost. I'm in Leicester and one of 40+ patients using Pegasys successfully in my clinic - my consultants definitely favour it for anyone under 60. If you want to pm me your email I can share some information they gave me.

  • Hello I'd like more info on Pegasys too please. I'm 34 year old female and was diagnosed at the age of 21 after giving birth to my daughter.

  • Hi ttjones - if you want to pm me your email I'll send you a copy of the study done in my clinic. The links that Stanley28 has posted on here are very informative too.

  • Hi Andy csn you please email me the study ninsgreenwood@hotmail .com thank you

  • Hi Andy I've just sent you my details. That would be much appreciated.

    Cheers.

  • I'm 49, ET Jak2 neg. I'm on 1500mgs of chemo daily, 2000mgs at weekends and my platelets are only 468!! I'm also on aspirin and tablets for palpitations. Pegasys was not an option at my hospital nor with my consultant as I have no history of thrombosis or clotting, plus it's not prescribed at my hospital. The only option I had was to change to another chemo which was Anagralide (spelling!). I refused that as I was advised depression was a major factor with this chemo. Everyone reacts differently to all drugs. I'm in constant battle with my consultant as to why I'm on so much chemo when I read people with a count of over 900+ are only on 1 aspirin a day and mine are just over normal range but still I'm 3 tablets a day.

  • Hallo Jasbak22 - can i please direct you to this paper onlinelibrary.wiley.com/doi... it isn't an open access article which means that you can only read the abstract without paying, but it is a very recently published paper from the British Journal of Haematology which says that elevated platelet counts isn't a risk factor on its own. if you are under 60 and have no history of thrombosis then the latest thinking is that we probably don't need to be on medication. this is another very recent paper (this is open access so you can read it all) onlinelibrary.wiley.com/doi... from the Americal Journal of Haematology which says the same thing. i took both these papers to my consultant to discuss. i am a similar age to you with a platelet count between 1200 and 1400 and i have made the decision not to be on medication - but it is a very personal decision.

  • i am on aspirin

  • Thanks Stanley I'll look into that.

  • Are you taking daily asprin?

    My husband consultant prescribed him lansoperzole stomach protection tablet.

    So he takes this daily too.

    We thought life begins at 40 we've both got tablet boxes with the days of the week on so we don't forget to take our tablets.

    We feel old before our time 😂😂😂

  • Yes the entric coated ones.

  • Hi Stanley - very interesting articles.

    Many thanks for sharing them.

    Andy

  • Hi, I was diagnosed with ET just over 5 years ago , my counts were in the 700's, my consultant was of the opinion that with no other risk factors I could just take a baby aspirin a day. I have just turned 60 , my counts are between 800-900. She now is edging towards me starting treatment , but still says its my decision. I am very reluctant to say yes, I have no symptons and good quality of life and to be honest am very afraid of taking Hydroxyurea. I know my stroke risk increases after 60 but I will hold out as long as she allows me.

  • Hi. I'm 42 with PV and only on aspirin still. My platelets are generally around 850 but at the end of last year went up to over a 1000. I have been told that 1500 is the magic number! I would be tempted to question why they want you to go on Hydroxy if you are considers low risk and in good health. I certainly won't be going on anything yet, and I have been given the option if I wanted, but I turned it down !!

  • Hi Ruby, my haem who's a locum just called me and said after reviewing my blood results and the fact that my platlets have risen slightly from last time that she thought HU should be the next step. But after reading g all theses posts I think I need to ask her a few questions. If I had horrible symptoms like some people have then I guess HU would be a godsend but as I don't I wonder if it'll do more harm than good.

    Thanks for everyone that's commented on this post it's nice to have such a great support network.

  • Have you had a diagnosis?

    My husband is 45 now he's was diagnosed 4.5 years ago with pv jak2 positive.

    He was on asprin and having regular venesection for 3 years.

    He went onto hydroxy as he was so drained because of all the venesection he was having.

    He's had no side effects from the hydroxy

    Tracey

  • Hi Tracey I'm too PV jak2 positive originally diagnosed in November 2016 when I went to the doctors with a swollen toe and blood counts came back high. Had about 7 venesections about a pint a week, had last one in January, never had any issues with the venesection feel fit walk over two miles a day plus have demanding Job in advertising. I rest and get a good amount of sleep, eat well, drink alcohol generally only at weekends. If I didn't know better I'd say there was nothing wrong with me but my counts say different.

  • My husband is exactly the same as you.

    He was really fatigued every day last year he was so worried he stopped caffeine and what a difference it's made.

    He works full time he's a quality manager on a big project. He travels and hour each way to work, so his tiredness is work related.

    His platelets are about 500 now they were as high as 800.

    He was having fortnightly venesection but after a few years it was really draining him.

    He's on an asprin a day and 500mg of hydroxy. He was so frightened to start hydroxy after reading all the side effects. Anyhow he's been on it a year gone November and has been fine.

    He gets 3 monthly blood check ups and he always needs a venesection so he has 4 venesection a year now.

    His iron is rock bottom but that's what the consultant wants.

    This site is brilliant the people are so supportive.

    Pv is covered under the critical illness cover.

    Write some questions down for your consultant before agreeing to start hydroxy.

    We were devastated and so frightened when my husband was diagnosed, but in all honesty he's fine we tend to think of it as a blood disorder. We don't read into as much now. The word cancer frightens the life out of people.

    We think ourselves as lucky as it can be managed and you live a normal life.

    Take care

    Tracey

  • Thanks Tracey great to know there's such a great support network on here.

    Take care.

  • No it shouldn't , except lower your platelets. I'm 73 , dx 3 years ago with PV, Jak+. Hydrea lowered my counts in 3weeks and they have been stable since . I could be jusr lucky! No problems at all for me. My platelets were in the 900's also and HCT 51. All camevdown beautifully. Good luck.

  • Hi, I'm 55. Currently on 500mg. Of Hydroxy daily and low dose aspirin. Platelets near 1 mil. only been on hu for 2 weeks but platelets coming down. No side effect at all, but I am staying well hydrated. I believe that is key!! Best of luck

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