Is Aspirin needed for Et

[Na56]

I’ve just listened to the vlogcast with Alicia O’Sullivan and heard her say that aspirin is not required for ET just for PV. I was told that it was needed for ET to stop the platelets sticking together. Any thoughts please.

Thanks Irene

[AndyT]

Each of us is different but I’d agree with what you’ve been told. My consultant advised me to stay on aspirin for ET even after my platelets were brought into normal range as they are still ‘stickier’ than normal platelets

[Otterfield]

Aspirin is standard for ET.

[Cat_lady52]

I'm glad you asked, as I heard her say it too, I just hadn't gotten around to asking on here. 😊

[mhos61]

Yes, I picked up on that too. I have ET and aspirin has been part of my treatment since diagnosis. My understanding has always been aspirin helps the platelets become less sticky, and in so doing prevents any likelihood of ‘clumping’ which is a potential thrombotic risk.

The only thing I noted is Alisia’s platelets were super high at diagnosis (3000)😮, which would make aspirin contraindicated. Maybe that had some bearing on her decision. However, I understood from that clip that although her platelets are now within range, she still doesn’t take aspirin?

A bit of elaboration would be helpful!

[hunter5582]

Aspirin is indicated for antiplatelet function for most people with ET. One exception would be for people with low-risk CALR mutated ET, where aspirin does not have a benefit that outweighs the risk. You will find multiple references to this in the literature. Here is one example. ncbi.nlm.nih.gov/pmc/articl...

Another exception os for people with ET who have developed Acquired von Willebrand Disease. This is a bleeding disorder caused by the thrombocytosis. There is a significant risk of aspirin increasing hemorrhage risk in this situation.

There is a bit of caution tobe used when older patients use aspirin. There is an increased risk of bleeding. That does not mean we should not use an aspirin regimen when indicated. It does mean that we need to monitor our response and be aware of the increased risk of hemorrhage. This did used to be an issue for me when my platelet were > 800. I experienced a noticeable increase in bleeding and unexplained bruising. With my PLT well controlled, this is no longer an issue. The aspirin benefit is clearly worth the risks of use.

Suggest that you review your question with your MPN care team for case specific feedback on your own use of aspirin. Even when the benefits are clear, it is important to be aware of the risks and what to watch for.

[Na56 in reply to hunter5582]

Thanks everyone for your replies and your useful information Hunter. I did wonder if something had changed when Alisia said aspirin was not for ET only PV in her recent vlogcast. Kind regards Irene

[hunter5582 in reply to Na56]

I dis not see the comment so do not know the context. The main variation I know about has to do with the situations mentioned above.

[Scottishterrier]

I was prescribed it when I was first diagnosed with et jak2+but was left with severe constipation so was taken off that and put on dypridamole 500g moderate release I take one in morning and one at night it works 24 hours a day and have had no problems sinceStay safe

Scottish terrier

[Jynx93]

ET jak2+. I was put on aspirin straight away before going on Peg. My platelets were only 480 at the time. Everyone’s situation is different.

[Margaret2022]

I have ET and aspirin was making my stomach bad so the consultant said I could just stop taking it. I hate taking any medication so the least the better for me

[Exeter21 in reply to Margaret2022]

they should have prescribed the coated aspirin which doesn’t irritate stomach. I had same problem. But now on coated one & take with food no problem . I take it every other day 👍

[Margaret2022 in reply to Exeter21]

I would rather take nothing 😫

[Exeter21 in reply to Margaret2022]

so would I but my regular bloods show the density of platelet’s & having friends younger now dead from strokes or heart attacks I am glad I had a sports injury that showed up this rare disease. As no doubt I would have been another statistic in the gymn had I not ever learned I had ET JAK 2.

At least now on Interferon I have reduced the platelets . . Hopefully yours don’t increase 👍 Julia .

[Nmom]

my son does 4 days of aspirin and 3 days of fish oil (Sun, Tues, Thur, Sat and Mon, Wed, Fri). He also takes L-Glutamine on the aspirin days as it is healing for the stomach. Has anyone heard of nattokinase? It is a clot dissolving supplement. They are doing quite a bit of research in Japan on use with Covid. It’s very interesting and I would love him to take that vs aspirin. Easier on the stomach and the liver.

[Val_P]

ET makes you at higher risk of getting blood clots. Aspirin helps to reduce the risk. I couldn’t tolerate Aspirin long term and was switched to Clopidogrel instead. I still ended up with a DVT. Now I’m on Riveroxiban to thin my blood.

[Wyebird]

yep aspirin makes platelets less sticky

[Bill209]

My hemotologist/oncologist recommended that I take low dose aspirin daily for ET, so that is what I did.

I read about a study that found taking low dose aspirin twice daily (morning and evening) was significantly more effective for platelet management than taking it once daily and my oncologist did not dispute that, so that is what I do now.

[ainslie]

I would be careful about this, defo one to discuss with good Haem before changing anything

[Richinspirit]

Yes to Aspirin!

[Plate]

I have ET recently diagnosed. I take HU and 81mg aspirin . Already my response to the medication good. Now I take HU every other day and aspirin every night!

I hope you have a good response too!

[Anag]

I don’t know who Alicia O’Sullivan is. I can’t seem to find any medical specialist with that name, but all kinds of other people like a climate activist, law student,… please give more info.

ET needs Aspirin from a certain point, up to a certain point. I had ET for 7 years before I was diagnosed. 6 TIA‘s. If I’d been on aspirin, the chances are high that I wouldn’t have had them, nor the low pressure glaucoma, numbness in my extremities, vein problems, brain fog and beginning dementia, etc that came along with my high thrombocytes and sticky blood that was blocking my microcirculation into every capillary of my body. As soon as the aspirin started, wellness started.

Starting from 1200 (?) platelets, don’t remember exactly, there’s more of a chance that ETers blood becomes too thin, then causing danger of bleeding so aspirin has to be stopped as was the case with me once.

Each patient‘s needs have to be closely looked at. It’s not that simple and doctors or others, who make such simple claims, are putting others in danger.

It’s really good that you’re asking here! There are so many of us that dig deep and are willing to share and we are so full of first hand experience!

Stay well. 🙂

Anag

[Na56 in reply to Anag]

Hi Anag Last Thursday Mazcd posted a MPN vlogcast In Conversation with Alisia O’Sullivan in which she said that aspirin is not required for ET. She isn’t a medical expert as far as I know but it caught my attention. A few other folk on our chat line also wondered about it. Kind regards Irene

[Anag in reply to Na56]

wow. Now I’m super curious. Must listen to it.

[Anag in reply to Anag]

I listened to Alisia. Thank you for clearing that! Very good and supportive interview. The most important thing I learned from this, is that someone with 3 million thrombocytes is having a good life!! She is really a remarkable woman, and I am so thankful for her!

The statement about not taking aspirin is not clear under which circumstances she stopped aspirin. that’s a pity. We didn’t know how many thrombocytes she had at the time. when the thrombocytes are extremely high, there’s danger of the blood being too thin and bleeding.

Anag

[Metronome]

Aspirin is a standard treatment for JAK2+ ET, perhaps this is sometimes debated in the case CALR ET.

In France, we are given Kardegic, i.e Lysine acetylsalicylate, in powder form. Thus I am a bit confused about what actually a standard aspirin dose would be.

Kardegic comes in 75/160/300 concentrations (numbers correspond to the equivalent aspirin dose in mg) however the actual content of the 160 that I am taking, is 288mg of Lysine acetylsalicylate.

No idea what the difference is, nevertheless it seems that I am taking the equivalent of two baby aspirins at once but that is considered a standard dose. I never thought if that is too much or not compared to standard aspirin and which are the pros/cons over traditional aspirin.

[jewelmaker]

I am 74 years old, diagnosed 9 months ago and have been on standard aspirin (325mg) daily the entire time. For the last two months I also take 1500mg of hydroxyurea daily. My platelets now are 630. Fortunately the only side effects, so far, are a backache and fatigue.