et diagnoses age 30

[Bracken2022]

hi all I’ve been diagnosed with ET after ongoing tests from July confirmed with a BmB I didn’t have the gene but still awaiting mutation result my question is my levels are 1473 and have been that level since august I am happy to take aspirin daily and be monitored every 3 months they have prescribed 300mg aspirin daily with lanzaprosol my concern is everywhere I read everyone is taking a baby aspirin a day of around 75mg. I was also told my high levels would make me more risk of bleeds rather than clots so I am worrying that 300mg is a lot … has anyone any experience I haven’t got an appointment now until March an that’s with a haematology nurse an will only see my haematologist annually unless anything changes not sure if she clicked on aspirin or that level by mistake or if that’s what I should be taking any advise welcome. Ellie

[hunter5582]

The best advice would to be sure to consult with a MPN Specialist rather than a regular hematologist or Nurse Specialist. MPNs are rare disorders and optimal care requires consultation with a MPN-expert doctor. Here is a list. mpnforum.com/list-hem./

A few key points in what you have related. Checking on the mutations that cause ET, there are actually three, JAK2, CALR, MPL mutations can all cause ET. There are also people who or negative for all three - Triple Negative ET. Your treatment decision will be more informed once you have the results of the genetic analysis back.

You are correct that with platelet levels at 1473 you are at higher risk for hemorrhage. This can manifest as an increased level of bleeding/bruising or as the more serious Acquired von Willebrand Disease. Your hematologist should have already done a von Willebrand Panel based on your profile. You would also want to monitor your prothrombin times (ptt/appt - INR) to assess bleeding risk. Note that I tend to experience increased hemorrhage when my platelets are over 800 if I am also taking aspirin.

You are also correct that most people with ET would be only taking low-dose aspirin. In the absence of incidents of thrombosis or microvascular symptoms, it is not clear why you would be on a high-dose aspirin. Suggest you contact the prescriber to see if there was a prescribing error as you suspect. If that is what was intended, you need a clear explanation of why such a high dose was recommended.

In the absence of incidents of thrombosis, hemorrhage and microvascular symptoms the standard protocol for someone your age would be low-dose aspirin and monitor. Unless you have co-occurring medical conditions that increase your level risk or are having other significant MPN symptoms.

None of us are qualified to advise you about your care plan. Suggest that your entire diagnostic profile and treatment plan needs to be reviewed with a MPN Specialist. It is worth doing whatever is necessary to make this happen.

All the best to you moving forward.

PS - I as diagnosed with ET in my 30s too. That was about 30-some years ago. It progressed to PV about 9 years ago. I have lived a great life and at age 67 continue to do so. Please know that with proper MPN care you can expect to successfully manage the ET and have a great life too.

[Mazcd Partner MPNVoice]

hello Ellie and welcome to our forum. It can be very daunting when you are newly diagnosed, there is such a lot to learn and understand, we have a lot of very useful information on our website that will help you so do have a look mpnvoice.org.uk/

with regards to the dose of Aspirin, the best thing is to contact your haematology nurse and explain that you are concerned that you have been advised to take 300mg Aspirin rather than 75mg, and perhaps refer them to this information on our website mpnvoice.org.uk/about-mpns/...

Best wishes, Maz

[Hopetohelp]

I can see your concern. I thought everyone was on 75mg aspirin

[Bracken2022]

Thank you that was what I thought I’m okay about the diagnoses it was the best one to get so was relieved when I got the diagnosed ;I’m going to take 75mg aspirin until I speak to nurse as I think it’s an error so unless they can tell me why 300mg I’m just taking 75mg thanks for the list I’m going to contact them as being so young with high levels I think it’s best I get an mpn specialist thanks for feedback! I feel great weight lifted when I got confirmation of ET xx

[EPguy in reply to Bracken2022]

There are some MPN Drs who Rx 2 aspirin per day, in the US that would be 162, I was started this way. But one pill per day is more common. And even 162 is still well below the 300 your Dr suggested.

[Threelions]

Hi, & Welcome,

I’m not a medical professional but believe baby aspirin (75) is the preferred dose daily.

As others have said it’s definitely worth speaking again with your healthcare team.

Let us know how you get on & all the best👍