My mum has been diagnosed with ET and has been taking hydroxyurea since March, with her dose increasing to 1000mg/1500mg on various days of the week.
She just had her check up and blood results show no difference in platelet count & the consultant recommended seeing a rheumatologist.
How long should it take for the medication to start stabilising her count?
I am worried this means the ET has progressed to something more serious. I am going with her to her next appointment so I can interrogate the consultant! It's so frustrating and scary not knowing the full picture.
Thanks in advance x
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Pigeon18
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It varies. Some people’s platelets tumble right away. I had to have a few dosage increases over several months before they go within normal range. I’ve also read here from people who’ve had an MPN for many years that tweaks to dosage over time happens too. Try not to worry and it’s a very good idea to go along to the doc appointment. I’d even suggest writing down the questions you want to ask - and write down the answers too!
Dear Pigeon18, How great that your Mom has you supporting her. I’m afraid I don’t know the answer to your question of how long it takes. But from everything I’ve learned, having high platelets that don’t respond quickly to Hydroxyurea doesn’t mean her MPN is more serious. But she doesn’t need a rheumatologist. She needs an expert in MPNs. Are you near any large hospitals or medical centers that would have some? Depending on where you live you can find names of experts from a variety of sources. And then that MPN expert, after seeing your Mom, can probably coordinate all of her future treatment with a local hematologist. We’reall different but I only need to see my specialist twice a year.
If you live in the UK, Maz (the administrator of this site) can probably give you info on specialists. I know of an outstanding expert in London but I live In the US so that’s all I know about UK docs. Katie
Hello Pigeon18, welcome to the forum. It can sometimes take a while for Hydroxycarbamide to reduce the platelet count, it is different for everyone, so there is no timescale, and your mum will find that her counts will go up and down all the time, and there may be times when the consultant changes the dose, this is why your mum will have regular blood tests. It is a good idea that you go to the next appointment and ask questions, and write them down, much easier to stay on track if you have them written down. Main questions are: what are the platelet counts (at the next appointment); have they reduced since the last b/test, and if so, by how many; why is she being referred to a rheumatologist. You are welcome to email me at maz.cd@mpnvoice.org.uk
My platelets took 2yrs to stabilise mainly due to my first consultant being afraid to increase my HU dose. I have had stability of my platelets for quite some time, since my dose was increased to 1,500mgs daily.I hope you get the same relief I did eventually.My haematologist was the man who made things happen, I asked for a second opinion as my dr at the time was not prepared to increase my dose.I wish you luck. Lav 007
Thank you. I am going with her to her next appointment but have been doing research on specialists. Are you in the UK? did you ask for a referral to a specialist?
I asked for a referal to My consultant and he puts all my fears to rest.Dr Mark Drummond The Beatson cancer centre a short letter to him from my GP was agreat help he saw me 14 days latter.I have complete trust in him.
Maz has a list she could sign post you to for all Dr recommended up and down the country.
Hi I’m on 1000 HU daily my platelets were over 1000. Then gradually went down to 380. But now 500 mark. But my headaches calmed that’s pleased me as it was a big issue. I’m no longer getting that horrible full up feeling when I’ve eaten. I’ve put on one stone. As my weight was an issue I was actually losing weight on start of HU treatment last Nov 2018. I try to sleep better I’m on Mitrizipine 15mg. Help me get adequate rest I need. So I’m just glad I’m diagnosed now. Ive bought factor 50 all prepared. Feel a bit down today yesterday was overthinking. So much has happened since being diagnosed. Blood tests the lot. So much was going on but not having a headache is the best feeling.
Glad you're feeling better. It makes me feel less worried hearing that other people's took a while to stabilise. Fingers crossed mum's comes down by her next appt
I just try not to worry as we all unique. I’m new to this Disease. But know I’m being monitored. I try to keep calm. I did have a few days this week overthinking of all that happened to me in such a small space of time. I’m glad I’m on this group it’s helped me so much. I’m spending some relax days but I’m glad I’ve been diagnosed. I know I go on a bit but none one really in my family understand my disease. Which can leave me isolated.
It may take longer as she’s only started in March. My treatment started November 2018. I was stressed too and my iron had been low. So was still losing weight. I’d also lost a good friend in January so was down. Looked ill. My headaches calmed because of HU. But in May got a bad sinus infection. I was on Ampicillin 500 wasn’t really better until 3 weeks ago. I weighed myself the other day I’d actually put on just over a stone. I’m just taking it easy now. My Consultant said it may have been sinus infection that put platelets up another 150. No sure. I had some side effects of 1000 HU diarrea. But it may be I’ve inflammatory issues. So it’s not been that easy for me. I weighed myself this week have put on just over one stone. Needed to I was going through a lot emotionally. Also I was so run down too. I’m happy though I’ve come through it all. My headaches calmed now at last.
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