I've been lurking on the forum for a few months and am so thankful to have found this site at the beginning of my MPN journey. I'm a 30-year-old female in the United States with a likely diagnosis of ET. I will eventually be getting a BMB to confirm this, but I have platelets between 725-830 and I am positive for the JAK2 mutation. I had my first visit with an MPN specialist recently, and he strongly recommended I start taking one low-dose daily aspirin per day. I understand the JAK2 mutation in itself can make your platelets clump/act abnormally.
I'm concerned about starting daily aspirin therapy at 30 years old and the long-term risks/effects of taking aspirin, even if it is a low-dose. My one obvious symptom of ET is I bruise very easily and it can be painful. I know aspirin can make you bruise even easier and also possibly lead to new problems, like gastro-intestinal issues.
-Would anyone be willing to share their experiences about pretty long-term aspirin use? And if you haven't had issues with daily aspirin in your long-term use, are you doing specific preventatives?
-Additionally, has anyone opted to not take aspirin and to instead not take anything?
(Also, here is more context to my health situation: I drink a minimum of 1.5L of water a day. I keep to a mediterranean/anti-inflammatory diet with the occasional treats, and I am fit and active. I have had mildly elevated white blood cells off and on throughout my whole life, and my platelets were first elevated (497) in 2012 when I was 22 years old.)
Thanks so much!
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Lucy2022
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Hi, I had a stroke ( non MPN RELATED) aged 50. I took asprin for for years I then changed to clopidogrel because I started to have stomach issues. It didn’t change any thing so I now take lanzoprozole. I going to be blunt-
Hi there, I'm taking low dose aspirin for last 3 years without much issues (I had gastro problems long before this). I had the same concerns in regards of gastrointestinal issues. But it's been mostly fine. I did not have the bruising issue though. In contrary, I had frequent headaches and eye auras with the same platelet level as yours and aspirin helped to fix it immediately. So I think the risks of getting a clot with this level of thrombocytes is greater than aspirin itself.
I have pretty low platelet level at the moment, under 200 because of Pegasys and still taking aspirin as advised by my doctor and I have no bruising. Sometimes I take aspirin every other day.
So try not to overthink it and consult with your doctor. Good luck.
Hard to accept diagnosis at any age let alone so young ..
I have looked into alternative to aspirin but unfortunately no sound recommendations. There are herbs etc that could be effective but I gather it’s hard to get precise dose.
If you do take aspirin I suggest high dose vit. C at same time as aspirin can deplete C . And it’s helpful to protect stomach
Ask lots of questions , stay informed and keep on doing all the good. Things you are already doing
I started taking aspirin after a PV related stroke in 2012. They originally prescribed Clopidogrel, but I was allergic to it, so it was back to daily aspirin.
Thankfully, I don't suffer any ill effects with it, I tend to drink a small glass of milk before I take it, to line my stomach.
I'm also an easy bruiser, always have been - but for me, bruises are a small price I have to pay to avoid another stroke - I definitely don't want another.
Make sure to discuss your concerns with your Doctor or Haem.
I was diagnosed with a PV in January 2021 and since then I'm taking low dose Aspirin. What I learned so far - from my doctor as well as other guys with ET / PV - the affects on your stomach / digestive system may (heavily) depend on
when you take Aspirin
which dose (once a day or twice)
what manufacturer
what type (protect or not protect)
Playing around with all that variables helped me to find a variant which works fine for me.
You can also run (additional) tests to check your blood clotting factor in more detail, this (often) helps to check if you require Aspirin or not. Jak2+ mutations usually means that you are having an increased risk of thrombosis, but when your platelets count is getting too high (> 1.5 Mio) then you shouldn't take Aspirin at all.
I’m 38, ET JAK2+, have been on daily low dose coated aspirin for a year with no lasting gastro issues (my primary concern when starting).
Tummy was a little upset at times during first month. Bleeding from small cuts and injections takes a little longer to stop, and I bruise easier. As an unexpected bonus I’ve had complete relief from chronic back/neck pain since starting aspirin! No other negative or positive effects to report.
Payoff of reduced risk of clots definitely makes aspirin worth it for me - I had a very serious one at 22 and was lucky to survive. Not an experience I’d like to repeat if I can help it!
Ninja Nerd on YouTube has some fantastic videos explaining the blood formation & clotting process. This one on aspirin is particularly relevant.
It really helped me conceptualise why different drugs & interventions are recommended.
In the most basic of terms there are many factors that can make blood “clotty”, and while (for example) reducing inflammation might eliminate factor A, it has no effect on factor B. Aspirin eliminates factor B, but has no effect on factor A. Haematologists will assess your individual risk for each factor and prescribe different interventions accordingly.
I’ve been on aspirin daily for well over twenty years with no problems. I take the enteric coated type now. You can also take something to prevent gastric problems. Here in the U.K. it’s called Lansapdazole.
Hey. I was diagnosed age 26.....have been in aspirin daily (along with other meds) since then. Recently the bruises on my arms and legs are unbearable...I currently have 16 bruises from doing nothing and they arent little ones either...they are huge and dark purple....I have to wear ling sleeves all the time at the moment. Have just had to have blood tests for this to see if it's the medication and aspirin causing this (and vave been told to drop taking my meds until blood tests come back) will let you know what I find out and share the info to see if that helps you too
I've been taking low dose aspirin for 13 years and no problems. I take the enteric coated, just before my tea. I've always had a sensitive tummy and was on Lanzaprosol before I started with aspirin. I think the Lanzaprosol helps. No abnormal bruising. In fact I rarely bruise even if I accidentally bang myself on things.
Hi I have been taking aspirin for 27 years with no problems. However I NEVER take it on an empty stomach. I know it's a lot to take in initially but seek advice from the MPN Voice website and your haematologist and make the best decisions you can for you as we're all so different. There are some really knowledgeable MPN people on this page who can help greatly too and our very supportive. Good luck with your journey.
I too had the same concerns when I was diagnosed. I was older -49, but had no other health issues and was fit and active. I went to the GP thinking menopause, and came out with ET.
At diagnosis, my platelets were quite high 1300ish so when I saw the specialist he wanted me to take daily aspirin. I resisted for a bit, then took it for a few months – felt terrible, got loads of huge bruises, dizzy, felt like crap so I stopped them. I thought if i am getting bruises on the outside, what is happening on the inside?? Of course, my scaremonger of a specialist told me I’m going to die. But I pointed out that hemorrhagic stroke is far, far worse and much more deadly than a blood clot, so I’d rather have a clot thank you very much, plus thousands of people die every year from aspirin. So it’s good to question it.
Since then I have done a ton of research. Turns out high platelets by themselves is not a good indicator for having a stroke /heart attack. Elevated WBC is though, so do keep a check on all your levels.
I also learned the importance of keeping your blood vessels in tiptop condition. If the endothelial lining is in good order, there is no reason for a clot to form. This led me down the route of changing my diet, cut out all the sugar, carbs, eat lots more veg and good quality meat /fish and only healthy oils (not highly processed vegetable oil). I have learned to check all labels in the supermarket, amazing what crap ends up being called food.
So, over the years, my platelets have dropped to 700’s and up to 1600’s – for no reason I can find. However, I continue to feel very well, cycle, play tennis, have a big garden to tend, usually travel quite a bit.
What I now do, is due to very mild erythromelalgia, I now take ½ an aspirin every 3 days. When my toes start to tingle, I take aspirin and then no problem for 3 days. Aspirin is very effective for that symptom of ET.
Of course, everyone is different so you need to do your homework too. And keep a check on all your blood levels, not just platelets. Check is your diet health promoting or do you eat a lot of processed food. Reduce stress levels . Are all your vitamin levels optimal? For eg: Low B12 can raise homocysteine levels which can contribute to arterial damage and blood clots.
Don't feel pressured into doing anything you are not comfortable with. The doctors are there to give you advice, but ultimately the decision is yours.
Hi I’ve been taking aspirin 75mg daily for over 20 years with no problems hope that helps
I too was concerned and decided rather than asprin to go down the turmeric pathway taking it in whatever form I can - Cucu10 tablets, turmerci oil, grated in drinks, added to ferments.
I am also doing the same as Amethist apart from the erythromelalgia - before diagnosis I had this very, very, very badly and was told asprin would help - it did not. I had daily broth, not for this, but found that it had the unexpected side effect of all but getting rid of the erythromelalgia. (recipe in my profile). So - I keep that up for maintenance and hope it might be helping in other areas as well. I do a lot of ferments (veges, milk kefir and kombucha) as they make lots of things more bioavailable and keep my gut more healthy as well. That has helped a heap with energy ....
I’d be looking into why you bruise easily to start with.I don’t want to start any scary meds yet and I’m MF2!….but I happily take 100mg Aspirin a day…so far so good, it’s only been 4mths though.
We are all different, I took aspirin for 25 years before having any issues. Last couple years I have had some stomach bleeding, ulcers, etc. But, compared to all other meds aspirin is still probably safest. I started a PPI and doctors lowered be to 3 x a week, hopefully this helps. My dad has been on aspirin for 50 years with no issues. Best of luck.
I can never say enough times each person is sooooo different on how we react to ANY meds including the lowly aspirin. I’m 78 and when I was growing up in west Texas aspirin was about the only thing we ever took for almost everything. So I can say I’ve been taking aspirin for over 70 years without any problems. I have always bruised easily and maybe the aspirin causes it. I don’t know but I do know it’s the only thing that will knock out a migraine!….. and now with ET Jak positive I’m not taking any chances at my age so I take a daily dose twice a day plus Hydrea every three days. Take it with food or milk. Cut it in half and take it twice a day instead of once. But just keep in mind please what any of us tell you we are we and you are you and no two people will ever react to meds exactly the same or reap the benefits of it. Just look at how many different chemo pills we all take with the same diagnosis. And they’re far more “dangerous” than aspirin. There will always be someone who reacts negatively to some meds somebody is taking. I can’t take Advil. Other people swear by it. 🥴. Getting information is important but nothing that is said on this forum should be taken as gospel truth but just for consideration. I don’t even take what the doctors say as the absolute. I’ve been known to adjust my meds according to how I react to it until I find a dosage I can live with and yet get the health benefits it offers. If nothing works I’ll ask for an alternate medicine. Doctors are supposed to be our partners not our masters. Arm yourself with reliable information and listen to the only person who really knows you and if the meds are really working…….YOU. Good luck. It can be a scary journey but the forum is here to support. God bless.
For what it’s worth I don’t believe aspirin does any good at all, after researching. Certainly does plenty bad. I chose not to take it but take turmeric/garlic oil and other supplements. The people’s Chemist has some good info on the dangers of aspirin. As others have already mentioned you are the final judge on what’s best for your situation - just because a doctor believes in the standard rhetoric taught at medical schools it doesn’t mean you need to. There’s plenty evidence to the contrary. As you say staying healthy and active goes a long way to keeping complications at bay.
I’ve been on daily aspirin for nearly 18 years now with no GI issues - I do bleed and bruise quite easily but nothing I can’t cope with.
First few years I just took standard aspirin but then switched to the enteric coated version - there seem to be pros and cons to that but I feel better taking that precaution…
I just came out of hospital, a fractured skull three years ago from a double seizure, [JME epilepsy 51 years] affecting by balance, getting up and down leading pressure to the brain, discharge from the ears, and a distinct change to my eyesight, I after various tests and scans, found a touch of COPD, but eventually diagnosed aspirin, which I suppose has thinned the blood, I am now 65, but my eyesight has righted itself, according to my optician, now wearing my old specs. pre 2018, and I can get up and down [slowly!] the pressure is definitely lessening! I have noticed scabs on the crown of my skull, which do bleed if agitated, and distinct bruising on my right thigh which are new? I do take lisinopril 10mg for high blood pressure which I have for many years, but so far🤞improving👍
Thank you so much for your responses and for sharing your experiences. It's very helpful and comforting to hear from people in similar boats. I'm making sure to keep in mind that people have different experiences with using any medication (and not using medication).
I so appreciate everyone sharing. Thank you again!
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