I'm new here

Hi, I’ve just joined the forum and wasn’t sure where to introduce myself.
I was diagnosed 5 years ago with ET. Managed with Hydroxycarbamide. I’m sure I will find this site very helpful. :blush:

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Hi @Pipsy and welcome to the forum!
It’s definitely a helpful and supportive place where you we can all share experiences and say how things really are for us.
I look forward to learning more about you. How are you doing? :joy:

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Welcome @Pipsy

Hope you’re well and well done for finding us.

I know only too well that there are some amazing, brilliant, knowledgeable and supportive people on this forum and know many have the same diagnosis as you both newly diagnosed and with years of experience to guide, advise, and support you through this!

Be sure to use this forum for the good times and the bad times and or to learn more about the present and future.

You’re not alone in this :slight_smile:

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Hello Pipsy - welcome :grinning: I am a fellow ET patient of some 17 years, I had many years on Hydroxy and it’s very effective isn’t it at keeping platelets in good range. Yes you will enjoy being here for sure.


Jilly, unfortunately my platelets along with the Hydroxy are on the rise. They were stable and only just started going up this Spring. Seeing a new Haematologist next week so see what is suggested. :blush:

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One thing with hydroxy is that they will start you on a relatively low dose to test how your body reacts, if it doesn’t show signs of side effect symptoms, they may drastically ramp up your dosage. To a patient this may seem like things are getting worse when really it’s a way of easing your body to the required dose that’s right for you. You may see things getting worse as you body work against new treatment before the treatment starts winning.

Everyone’s dose is different.

What I’m basically saying is don’t be too disheartened if you experience the bad days/times, sometimes these are necessary for you to proper enjoy and appreciate the good days/times more :slight_smile:


Hi @pipsy I am so glad you have found us and posted on our forum and so well too.
Others have shared their experiences so well.
How has the emotional side and Covid times been for you?
You are now part of our forum family.
Look after and be kind to yourself


Yes I can understand your concerns Pipsy - but as Rammie mentioned it happens, actually more often that not for many patients, that platelet levels go up and down - I remember being told by my initial consultant to expect this and also to expect my dose of Hydroxy to also be regularly tweaked - and that it’s not a sign of anything wrong or adverse, it’s how the treatment programme goes - such an individual thing too he said, with one ET patient needing 3 or 4 capsules a week to help their platelet count yet the second patient needing 3 or 4 a day - there’s no set pattern, no right or wrong, I must admit in my 13 years on Hydroxy my dose was tweaked almost each check up to all manner of variations but always on the higher doses of 3 or 4 a day :grinning: and my platelets varied greatly up and down all the time, very rarely within normal range - and it was always ok and well monitored with regular blood tests and appointments - so do know your situation is very normal, albeit I do well appreciate when things go up it is a stressful thing to hear - and often next appointment it’s all change and down a bit again. I am on Peg interferon in recent years and it’s similar with that too. Let us know how your next check up goes


Thank you, for your replies. It’s great to get the reassurance.