I am 12 year ET Jak2. I take Asprin and 500 Hydrea daily. I also take Gabapentin, Tramadol for Chronic pain that started around the time ET started. My question is I am yet to have a platelet count in the normal range of (150 to 450) Australia, despite taking Hydrea for near on 2 years. Is this normal?
My Hemo does not appear concerned. My monthly levels are about 500 to 690.
Thanks Anna
Hi Annastaunton,
As far as I know the ideal aim would be to get your platelets below 450! Prior to this number, it used to be below 600.
I have ET, and at diagnosis my platelets were 500; the haematologist considered this too high. I’m on hydrea (low dose) too and my platelets sit around 370 now.
What were your platelets at diagnosis? Maybe if they’ve tumbled significantly and you’re asymptomatic your haematologist isn’t too concerned. I would definitely question what the aim of treatment is with hydrea in relation to platelet counts.
Mary x
Hi Mary
Thank you so much for responding to my query about elevate blood counts despite treatment with Hydrea 500 daily and baby Asprin. My platelet count on diagnosis was 1 million. Regrettably I have become extremely symptomatic this year. Dreadful sweats and chills, Excruciating pain in shins bilateral type of cramps, exhaustion, insomnia, breathing difficulties from time to time, I have times when my eye lids droop over my eyes, it goes on.
Kind Regards
Anna
You’re welcome Anna.
As you have developed ‘new symptoms’ I think you need to have a detailed chat with your haematologist. It may be just that an increase in hydrea is all that is required.
Good luck
Mary x
Hi Mary
ET Jak2 - I have just come across this old post. As it turned out I had pneumonia undiagnosed for over 9 months. The end result was that it scared my lungs. I had to learn to walk unaided again and many other things. My GP did many tests trying to diagnosis the problems I was having but in the end it was a Doctor that I had never met before who diagnosed me. It was over the Christmas break two years ago while my GP was on leave. I went to a clinic that specialised in damage to limbs as my upper right arm was in dreadful pain, I ended up have bursitis.
My GP kept telling me my bloods were normal and other than the obvious like Haemoglobin count, platelets haematocrit, he was right. What fascinated me most was despite being so ill my white blood count remained in the normal range. Certainly no indication of an infection. The new GP diagnosed me by using his eyes. he looked at me asked a few questions, established the MPN - ET diagnosis and thought 'Lord this lady looks ill'. Nice Doctor, I have never seen him again but his medical capabilities were exceptional. Cheers and hope all is as best as it can be. Anna XX
Hi Anna.
Just familiarised myself with your original post.
Goodness, what a tough time you’ve had ‘living with pneumonia’ for all that time without a diagnosis! The detail of your slow rehabilitation is an indicator of just how ill you were. Presumably, the normal wbc misled your GP? I imagine it may have even been a worse case scenario if you hadn’t seen that second Dr! You must feel indebted to him.
Wow, it is so strange your wbc didn’t respond to infection. I know hydrea can suppress all blood counts, including the wbc, but I’m not sure if it affects the wbc response to infection. I do know in my case it hasn’t. When a dipstick test recently revealed I had a UTI (I’m on hydrea) my wbc did elevate in response to that, but may have been considered in the normal range at 9, but NOT normal for me. Fortunately, due to having ET, I have a history of blood test results to compare to and I know that my wbc range is always around 6.
Your case is extremely interesting, and I would want some answers particularly, in relation to diagnosing any future infections.
I do hope you continue to recover well and thanks for the update.
Mary xx
Hi. Has your haem ever discussed raising your dose of HU? I started fairly recently on Hydroxy (within past six months). My platelets initially tumbled, then tumbled again but then stuck around the 600 mark. I was prescribed one extra 500mg tablet once a week. And hey presto on the next visit I hit 408. And amazingly all other counts were normal too. That’s the first time in nearly six years. Yeah! And definitely, if you’re getting new symptoms (I think you posted elsewhere about nightsweats etc - and assuming those symptoms aren’t due to something else, hormones etc) then you do need a review. Certainly my haem team (Guys in London) did not appear content to leave my platelets above 400 / 450. Good luck.
Thank you Ebot
No hormones, for many years now. I don't take hormone replacement because of high platelets and risk of clots. My MPN team consists of one Haematologist who reviews my bloods monthly and I visit every six month. He is a lovely elderly man who rarely says anything. I may bring up a concern I have about a symptom but he doesn't explain why or why not. I travel over an hour to see him. He is always available by skype and writes letters to treating doctors if I end up in Emergency. I love England. I remember the first time I visited thinking Paris is nothing compared to England and now I know why the British are so proud of being British. Cheers and I hope all is ok with you.
Kind regards
Anna Australia
Hi. Over the 18 years or so of treatment with HU I don’t think I ever reached 450 or below despite finally taking a dose of four tablets a day! My ET progressed to MF and I’m now on Ruxolitinib. My platelets count, as all my other counts too, has dropped and is now around 30-40 which means I bruise like a peach! I would need platelet transfusion before undergoing any surgical procedures now.
I hope you are able to freely discuss your symptoms with your haematologist. Have you considered referral to an MPN specialist. It might be worth your while.
Dear beetle
Thank you for your response. I am sorry to hear about your progression to MF. I live in on the Sunshine Coast an hour north of Brisbane in Queensland, Australia. I have read that we have some MPN research specialist somewhere in Brisbane but I have not had any locating one how treats patients. I will discuss my new symptoms with my Heom next time I see him.
I wish you all the best. I didn't know platelets could go so low. You are in my prayers.
Anna
Hi Anna,
I am a fellow Aussie from Melbourne 
So sorry to hear you are struggling with a few symptoms.
It seems to take a lot of altering the dose of HU to get it right for each individual. My platelets seemed to have a mind of their own and would bounce around all over the place when I first started HU. This happened for many months (maybe even years? It was so long ago now, I can't really remember)
I've just started back on HU and platelets have come down a little but are being a bit stubborn. I'm now looking into interferon as an alternative treatment. Have you been offered other treatments if HU isn't agreeing with you?
Like your haematologist, mine was not too concerned if they weren't always in the normal range.. though he always said it is not so much a worry as I'm still quite young.
Take care, keep us posted
Hi Anna,
I was diagnosed with ET almost 11 years ago when my platelet count was around 550. My treatment for the first 9 years or so was a daily 100mg aspirin.
I was prescribed Hydroxyurea in August 2021 initially at 500 mg daily. This was increased by an additional 1000mg per week. After 7 months my platelets actually increased to 670 and I developed peripheral neuropathy. My haemo took me off the hydroxy May last year and for now I'm only on aspirin.
My platelets are hovering around the 600 to 620 mark and my haemo doesn't seem unduly concerned at the moment. Unlike you though I am triple negative so I don't have the JAK2 risk factor although I have just turned 62 so my age would normally indicate treatment beyond aspirin.
I have included a link to the RACGP protocols for MPNs which you might find useful.
www1.racgp.org.au/getattach...
Treatment protocol can depend on your age, gene mutation and any other cardiovascular risk factors.
For now I have three monthly blood tests and six monthly appointments with my haemo.
Does seem odd that after 2 years on Hydroxy your platelet count hasn't normalised. It's either not a sufficient dose or like me you may be treatment resistant.
I am in Tasmania by the way.
If you have concerns discuss with your haemo again. If you aren't experiencing side effects from the hydroxy perhaps a small increase in dosage might do the trick. The extra 1000mg weekly started to bring my platelets down but then I was hit with the peripheral neuropathy so I discontinued treatment.
Best of luck with it.
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