My platelets are high, but I'm not on medication

[lynnieb]

I've noticed a few members on here with platelets lower than mine, who have been prescribed medication. I have ET, JAK2 negative, and my platelets run at around 1300. I'm 46, and I also have neurofibromatosis 1. I feel rubbish most of the time, and would gladly take something if it'd help. I'm just on Aspirin though, for the 18 months since I was diagnosed.

[Mazcd Partner MPNVoice]

Hi Lynnieb, being on medication for ET, or any of the MPNs, is completely individual and is based on your blood counts, your overall general health, past and present, any other medical conditions you have and any risk factors, like blood clots, heart attacks and the severity of any symptoms you are experiencing. Your haematologist will assess all of this when deciding whether or not you need to be on any medication other than aspirin at the moment, so even though many people have lower platelet counts than you they have been assessed as needing to be taking medication to lower their risks of blood clots etc or to control their symptoms, which was the case for me, my symptoms were affecting my quality of life so much that it was decided to start taking Hydroxycarbamide, which did lower my platelets and keeps them low but significantly reduced the severity of my symptoms.

Best wishes, Maz

[Paul42]

Hi

My sister has a platelet count of about 900 and is only on clopidogril as she cannot take aspirin.

She was told originally (10 years ago) that if her count went over 1000 they would consider hydroxycarbomide, or when she passed 50.

I know they have told her more recently that they wouldn't now do anything until they are over 1500 or she is 60.

Each individual is different of course but I am sure they are happy with your current treatment plan so dont worry.

All the best

Paul

[conno61 in reply to Paul42]

I've questioned this too. I'm almost 55, my platelets are almost a million and I'm on baby aspirin . I get headaches around the time I need to take my next aspirin and also suffer from the swimmy head problem . my haemotologist doesn't seem worried or bothered for that matter , I find him quite condescending , so I just get on with it .

[Susana7]

I only started treatment with interferon when platelets reached 1.5 million. I was on aspirin only before that, and the aspirin had resolved most of my original symptoms (silent migraines/auras, painful feet, chest pains). The treatment has its own side effects, so it is a balancing act between disease symptoms and treatment side effects. It is a very individual decision. Good luck!

[Stephen399b]

I also have ET and Jak2+, but am older than you but working full time. I take HU and asprin and apart from feeling a bit more tired have no side effects - in fact I have found that there are several problems including silent migraines and numbness in arms and fingers have gone.

To Conno61 I would definitely get another opinion. I was getting other side effects from my other diagnosis of systemic mastocytosis and my haemo ignored them until I felt I had to find someone else. Having done so I was immediately sent for other tests and the problems have been sorted out. If they ignore your concerns then find someone who listens!