Feeling fed up

Hi everyone. Just needing some support. I was diagnosed in January with ET. Started on Hydroxi 1 x daily, which have increased to 2 daily as platelets only decreasing slowly. Today I had my consultation, platelets still not within range, 640, and I’ve got to increase Hydroxy to 3 x daily :frowning:.
Anyone else in some position. Just worrying, my platelets will never get within normal range.
Thanks for listening xx


It sound’s as if you have had a very worrying and perhaps disappointing day @May14 and that you are really fed up.
I am not in your position, but perhaps it might be an idea to be very kind to yourself tonight.
Perhaps tomorrow you might give your specialist nurse, if you have one, Consultant or GP and ask them the question.
I am so glad that you posted as you are part of our forum family and I really hope someone will be able to help you more.
Please let us know how you get on and look after yourself

Hello May14 - I am a fellow ET patient diagnosed 17 or so years ago - I had 13 years on Hydroxy - so please know that your situation is very normal! Doses have to be tweaked and played around with to find what works for each individual - so your pattern so far is very much how it is - some do start on a low dose and that starts to reduce platelet counts for them - others it takes some tweaks up to find the right dose for you - so please don’t worry you will get there! A higher dose doesn’t mean your condition is worse than the patient on one a day, Hydroxy is very individual and different for each patient and there are no right or wrongs. It was explained to me when first diagnosed and straight on to HU by a consultant who had had decades of experience with using Hydroxy - he said some patients Jill will take 3 capsules a week for years and will be well controlled others it can take 3 or 4 a day to do the same - both are the same neither worse than the other. He also said just expect your dose to be tweaked up or down over coming months and years as they keep checking counts and readjust doses accordingly - and that was exactly how it went for me for the next 13 years and I always knew it was normal from that kind explanation he had given me (had two further consultants since!) - and I often was on 3 or 4 a day - even had a time when I had 3 each weekday and then had the weekends off which bizarrely did the trick for really keeping my counts lowered - so keep going and you will soon find those platelets are dropping :grinning::grinning: keep us posted! Oohh and do remember lots of water and fluids as that does help with a few more capsules being taken in your week. All the best


Thank you for the replies and support. It’s great to be part of such a caring group. Xx


Hi @May14, thank you for sharing what you’ve been going through. As others have said your position is certainly normal and it can take time to find what works for you. Do keep in touch with your treatment team about your concerns so that they can best support you, and please know that our Support Team are here for you if you’d like to talk things over at any point (0808 2080 888 or support@bloodcancer.org.uk).

Take good care of yourself.
Best wishes,


Hi @jems14541 I agree, if we did not have the lows we would not appreciate the highs.
A flower needs rain and sun to flourish

Hi I started in January as well with platelets at 690 initially on 1 x 500mg and then 1x 500mg during the week and then 2x 500mg at the weekends the platelets started coming down but not enough.

I then got moved onto 2 x 500mg per day for the last month or so and at my last test my platelets were down to 479 so it’s definitely working and fingers crossed at the next round of tests I should be even closer to normal levels.

So yes it does work it just takes longer than we want. I’m hoping I don’t have to increase much further because at the moment I’m not experiencing any of the side effects that terrified me when I read about taking this drug.

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Hi @May14 just wanted to check in with you and see how you were doing? Did you get up to anything over the long weekend.
I visited Bristol a place I used to work at loved the city so much I’ve been back every year since leaving to come back up north 8 years ago.
Hope you have started to feel better and those platelets are behaving.

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