Essential thrombocythemia (ET)

1. Hi there, I've been on hydroxycarbomide and aspirin for  just over three years now and my platelet count is now nearly where they want it to be, as said  by Hazy earlier it hasn't helped with the fatigue or the pain( which they  now say could be fibromyalgia)  but  I do think it's worth taking the medication to keep the platelet count at a safe level x

Hello I have not posted before but I am very interested in what you said. I have been on Hydroxycarbomide for 5 years now and my dose is adjusted depending on platelet counts. I have terrible bone pn in my heels and up my legs into my back- I was on morphine for months last year & now on paracetamol & gabapentin. Where is your pain & how is it being treated? I wish you well

The pain is mainly in my feet, shins and back, but have aches all-over  some  days I can hardly walk, the consultant tested me for lack of protein, bone disorders but nothing was found so she thinks it maybe fibromyalgia, but I'm yet to be diagnosed because!  Can't get in to see my GP, they just sent me a link on how to deal with pain which doesn't help. They have given me a strong cocodamol, but to be honest it's not much good. I was talking to an elderly gentleman whose wife had similar pain and he told me she used to rub vicks vapour rub into her legs, I gave it a try and found it eased the pain , didn't get rid of it mind.  I wish you well also 

My consultations with Haematology are now also by telephone only. It was a bit scary at first but it has been the same nurse a few times now and I have found the continuity of the same person good. Happy to talk if you would find that helpful.

Hi Caya - I was diagnosed with JAK2 ET about 8 years ago too - I was put on Hydroxy and it's kept my platelets at an acceptable level - I was told the risk of Leukemia is fairly low and alot never get it - a high platelet count is more damaging as I was told it significantly increases the risk of either heart attack or a stroke - ET untreated can also lead to many health issues including what you are describing - apart from one hiccup when I changed to Interferon which didn't suit me (I'm back on chemo now)  I've been really well on Hydroxy - I do suffer with mouth ulcers but have prescribed medication to help - JAK2 ET like you say is incurable so it's best to manage it and once you do it's possible you will go on to have a long and productive life - I'm also on Clodigrel as that's kinder to the stomach than aspirin - I also get joint pain but am on anti-inflammatories and I'm part of a walking group so all able to walk several miles - you will have a specialist nurse assigned to you if you go on hydroxy and will be able to ring for advice etc - mine had been invaluable when I've had problems - you'll get regular blood tests that will check everything and your chemo will be adjusted depending on platelet (and other cells) count - I do hope this puts your mind at rest and you get the treatment that's best for you - I was 62 when I was diagnosed and 70 now and still very active 

Hi Desmum thankyou for reply I already git a nurse both hemotologist and nurse told me that hydroxcy might help with preventing stroke and cloths but will trigger lukemia faster thats what is a bit scary as not looking good either way, I am very active cycle a lot walk 6miles 6 times a week plus yoga ,do get pain as said but cope with that ,glad to hear you feel better and thankyou  for reply very kind of you I am seeing hemotologist every 6 weeks ,bloods lots counts how many times a month surprise there is some left hehe) getting more white cells now great so I dont know regards 

Hi Caya,

I suffered with high platelets, fatigue, dizziness, mouth ulcers, night sweats, itchiness, headaches and neck stiffness.  My GP kept saying all was OK and there's nothing to worry about. I got a second opinion and  a haematology referral and received my ET and JAK2 diagnosis in August 2021.

I was started on weekly Interferon injections and after 4 months the dose was increased due to it not having and affect in reducing symptoms or platelets. My symptoms got worse after a month and thankfully my haematologist told me about a clinical trial. 

I managed to get onto the trial 2 weeks before it closed. I was told I was suitable as I'd previously had 2 strokes (aged 38 and 47).  I have to take medication daily, initially I was monitored every fortnight and now it's monthly.

I'm so grateful for the trial as my symptoms are no more and my platelets have reduced. I've been told that I will have to take the tablets for life and hopefully it will be approved in 5 years and available on the NHS (fingers crossed).

Perhaps any readers should ask their medical team if there are any clinical trials available, just a thought.

Thanks for this gchick - I was taken off chemo and put onto Interferon injections - but it didn't keep my platelets low enough and made me very ill including hair loss - so I am back on chemo experiencing horrid mouth ulcers - I will certainly ask if there are any clinical trials available - can I just ask if whatever you are on is better regarding side effects than the chemo tablets Hydroxycarbamide ?  I'm so glad you've found something that really works for you 

Hi Desmum,

Sorry to hear you're suffering again.  

I've not tried Hydroxycarbamide as my consultant said I was too young (50 - lol) and I wasn't very keen due to what could potentially happen later on. 

The only side effect on my trial drug for is loss of appetite (I needed to lose a few pounds anyway - lol) and food tasting sweet and sugary, although that only set in when my dose was increased.  I've been told that 30% of people have taste issues, although I don't know to what extent.  I'm at the hospital in a week so I'll be asking for more info.

I hope your symptoms improve.

Very new to everything here … diagnosed 3 months ago with ET .. haemotology staff completely dismissive of my fatigue - consultant said nothing to do with my platelet count of circa 800 .. finding it all confusing..!