Aspirin

[Contrarymary3]

If platelets go up over a certain limit, is it advisable to stop taking aspirin? If so, what is that limit? Mine have gone up to 1200 and I’ve been told to increase my dose of hydroxy but stop taking aspirin.

[hunter5582]

It depends on your individual response to the elevation is platelets. At that level, you are at increased risk for hemorrhage, possibly at risk for Acquired von Willebrand Disease. Your hematologist will likely have done a von Willebrand panel to check on your status. Your prothrombin times should also have been checked.

Your hematologist can give you the most accurate answer about your individual hemorrhage risk. You can, of course, make your own observation about excessive bleeding/bruising.

Wishing you success moving forward.

[ETket]

The advice I'm usually given is to stop taking aspirin when my platelets go over 1000.

[Amethist]

my platelets have always been around 1500 since diagnosis 9 yrs ago. At the time I was 49. No history of thrombosis etc. and otherwise in good health. The symptoms went to gp with turned out to be vitamin deficiencies especially B12 and Vit D.

At the time the haematologist put me on daily aspirin.

I noted I was bruising very easily, too easily , plus didn’t feel great on them, so I stopped them. Didn’t much like the attitude of my haematologist either so sorted out a 2nd opinion with an MPN specialist. Took a while so did lots of my own research on ET and aspirin and came up with my own regime, which is ½ regular aspirin once every 3 days. This keeps my erythromyalgia at bay and stops me getting huge bruises.

That’s all I take . Nothing else.

[Contrarymary3 in reply to Amethist]

Is your consultant ok with your platelets being that high? As soon as mine edged over 1000 they wanted me on hydroxy.

[Amethist in reply to Contrarymary3]

The MPN specialist was fine with it. The haematologist wasn’t (but I suspect I was the first ever patient he’d seen with ET )

I’m fine with it. That’s what really matters .

[Ebot]

Hi. I was diagnosed in my early 50s and my platelets hovered around the 1100 mark for about six years before they hit 1700 and it was a no brainer to start Hydroxy (which was transformative). I’m under Prof Harrison at Guy’s.

I’ve been on aspirin from the start and there’s never been a suggestion to stop taking it - except fleetingly before surgery etc. I’d definitely want to understand why your haematologist (an MPN specialist???) wants you to stop the aspirin. Aspirin and Hydroxy do different things and MPNs are tricky diseases to manage. We face both bleeding and clotting risks. Everything is a careful balancing act. If aspirin is causing you issues there are other options that offer the same benefits. Wishing you well.

[Luthorville]

I guess I'd ask a few questions back. What is your age (decade is fine)? Have you talked to your doctor about HU, Besremi, or Pegasys? Those platelets are quite high, and getting to a dangerous level. But since you more recently joined here, I'd really like to get a better idea of why the platelets are so high and whether you have tried or discussed other treatments.

[Contrarymary3 in reply to Luthorville]

I’m in my 50s and I’m on hydroxy. I’ve been on it for around 4 months now. Platelets were coming down initially but now going up again.

[Luthorville]

You are pretty young for hydroxy. Any reason you aren't on Besremi which has the chance to help improve the condition? Do you have PV/ET or another MPN? Where are you located (country)? Besremi typically brings down platelets pretty rapidly. Mine went from 1200 to normal in about 6 months.

[Contrarymary3 in reply to Luthorville]

I have PV. And I’m late 50s! In the UK. I was offered Pegasys but the side effects sounded terrible.

[Luthorville]

Yeah, the warning labels for both Pegasys and Besremi doesn't read well. But they are also the only thing that have a chance of reversing disease progression. You are still young, I would encourage you to talk to your doctor about it further. It's a significant decision. The longer you wait, the more damage will be done. Not everyone can tolerate Pegasys and Besremi. For me, I only almost no side effects, aside from itching.

[Contrarymary3 in reply to Luthorville]

I’ve been referred to a specialist so I’m hoping things will be made clearer regarding treatment options. I will ask about the benefits of the ones you mention. Thanks for taking the time to respond.

[Luthorville in reply to Contrarymary3]

Given how high your platelets are and that you do have PV and upper 50s, I would personally strongly encourage you to consider Pegasys in your discussions with your doctor. Happy to go into more detail and it's far from a sure thing. But the data seems very compelling if you have a reasonable chance to knock this back.

[Contrarymary3 in reply to Luthorville]

Hi, more detail would be very welcome. I was given the choice and given leaflets to take away. - but no real explanation as to how it works. The self injection put me off.

[ainslie]

I think that’s definitely for your Haem or a better Haem, be careful to get it right advice wise