My platelets are around 1100, minor symptoms ie the odd tingling in feet. I have been prescribed 100mg per day. Just wondering what everyone else is taking as I feel it may be a bit much?
How much aspirin do you guys take? : My platelets... - MPN Voice
How much aspirin do you guys take?
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Manaaki
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Standard low-dose aspirin in the USA is 81mg, which is what most take 1/x day. Some take that 2x/day when symptoms like erythromelalgia do not resolve. At one pint I was taking 1/2 of a chewable 81mg aspirin per day. I had a prior history of excessive hemorrhage when my platelets were higher. That worked fine for me at the time. I have since resumed a full 81mg daily dose. Am not having any problems with that dose.
Thanks Hunter 😊
I take one baby aspirin, in the UK that is 75mg
That seems a nice wee dose! I was hoping to get that one as I have heard about this baby aspirin dose before! 100mg seems to be the dosage it is sold here in New Zealand.
I also take 75mg each day and in the UK. Have PV, platelets between 400 and 600. I know it's supposed to thin our blood to prevent clots, and as far as I am aware it has had no adverse effects. Been taking for 5 years.
Hi I have PV and take 1 x 75mg dispersible aspirin a day, I’m in UK. My platelets have only been out of range once and are usually between 250 - 300.
81mg daily - sometimes double up prior to long (over 12 hours) flight (meaning take two a day that day)
in uk and take 75mg daily. Aspirin thins the blood and makes the platelets non sticky
That thinning the blood is the thing that also worries me because of my random heavy periods. That’s why I would like to take less aspirin. I m sure at some stage I will figure it all out but it all seems a bit wishy washy right now ☺️
I know what you mean. We just want to do the best for our bodies but information can be confusing
Hello Manaaki! I take one 75mg Aspirin daily.
Hi,
I have been taking one “low dose” aspirin - 100mg for years. platelets were 1050 down to 560 now back up to 922. This is the standard dose here in Australia prescribed by a Haematologist.
All the best to you 🥰
Oh did the aspirin lower your platelets? Yes same here in Nz aspirin standard dose 100mg I just keep seeing those other baby aspirin doses here on the forum and was wondering wether I should b on a lower dose but it is my haematologist who prescribed it. Hope you are living your best life 💐☺️🫶
The asprin doesn’t lower the platelets, it makes them less sticky. I was taking Hydroxyurea to lower platelets for a while, then went on to Interferon. Now I am on some other medication as I have been diagnosed with a very rare blood disease (only 20 people in Oz have it.) Happy days 🥰. Day at at time ❤️
Awww Leo Ihope you can stay well and live your best life for many many years ahead 🫶💐
hi I take low doze aspirin for more than about 12 years. I have high blood pressure and I take coveram . Also take pegas 90 mcg for every two weeks. Started this only about two months back. I am JAK2 positive and plats about 550 . Highest have been around 575. That is the highest for last 15 years. Only diagnosed JAK2 positive about three months back
I went on holidays for three weeks overseas. During that period I had to take one of Pegasus. So I bought the disoncare clooer and took the medicine. Unfortunately I couldn’t been able to keep in freezer as required. Hence when the time comes to take the medicine the temperature was normal air temp which was above 25 degree c. However I took the medicine. I believe that was off. Don’t know.
The reason of this writing is to mention about the side effects I am having. I have severe leg ache and pain. I am prior to taking this medicine generally physically a healthy person , regular walker, reasonably regular gym goer. I am 71 years old. The leg ache and pain is reasonably sever and I find it bit hard to do my normal daily duties. As well as at times I feel unbalance and loose control while walking. Doing usual gardening etc becomes a hard job. Have to take v regular breaks in between . Of course I am on Pegasus only from 19 th of July 2024.
Prior to taking this I had no issues as such. My plats were above 450 (543 on 18 June 24) haematocrit was 0.46(18 June 24) MCV was 77 and MCH was 23.5 on the same day in June 24. MCHC was 305 also on the same day .
However, in my previous test results for nearly 15 years almost always platelets were above 450 never over 590 as far as I remember Always around 450-550 .
The reason given to me was that taking this treatment it will reduce the progression of the PV and to avoid any other effects such as stroke etc .
I hesitated taking Pegasus for nearly more than 2 years . During that time I first consulted one haematologist and subsequently consulted the second specialist. The second one is well experienced person.
I have ET , PV and mild thromocytosis .
I wonder whether I have jumped into taking this medicine or it is the best approach at the moment . Taking this medication has no issue provided I don’t have these side effects . the side effects are killing me now . The other side effects are minor in nature .In legs both from waist down at times I have feelings of flow in there . Really I don’t know how to explain this feeling. In addition have sever pain .
On the other hand, I am also wondering whether the other leg issues I mentioned are due to some other reasons . I am also planning to seek consultation with neurologist soon to see whether there are any other issues I should consider .
I will have my next blood test and consultation with haematologist in about a month time .
I would like to hear from any one who had the same or similar side effects and how those progressed or reduced over time looking forward to hear .
sorry for long one and messy mixing different issues all in one. ( the cooler, side effects, blood results, illnesses, etc).
Gosh you are dealing with a lot!!!!!!! Ihope you find answers during your next appointment and that a plan going forward can be implemented that will bring much needed pain relief for you! Best wishes and all the best for your upcoming appointment! Hunter in this forum is quite knowledgeable with regards to PV!
I’ve been taking 75mg daily since 2003!
I take the enteric coated form to try and protect against any GI problems - none so far 🤞
100mg is still a low dose, as the standard aspirin tablet is 300mg in the UK
Hi, a bit like you. Platelets on the high side usually around 1300-1500. Mild occasional tingling in toes. I take ½ a regular aspirin when my toes tingle which work out once every 3-5 days. I checked this regime with an MPN specialist and she was totally fine with it. Not on any other meds either. Diagnosed about 8 yrs ago, but probably had ET for at least 10-15 yrs before that having looked back at an old blood test. No history of blood clots. I did find if I took daily aspirin I got a lot of bruising which is also not good. I also tried enteric coated aspirin and these did not work for me, and studies seem to suggest that too.
Thanks for replying I remember seeing your posts and thinking oh there is someone similar to me with very high platelets! Encouraging to hear! From memory you also take supplements and follow a special way of eating? Ihave added supplements as well like vit D, turmeric etc and it has definitely helped. What Amazed me is that my tingling decreased massively after starting on a high dose B compels vitamin. I just don’t want to start HU yet. I might be overreacting or overth8nking but I dread it soo much. And I am starting to think I don’t want a hysterectomy either. I am becoming very oppositional 😂😂
With my initial blood test, when I first saw gp with a great number of symptoms, my Vits D, B12 and folate were also tested. I was low in just about everything. GP totally uninterested in vitamins so got no help from them and so did my own research which was a massive eye opener. For me B12 was a game changer and gave me my life back and thankfully quite quickly. Also had to sort out thyroid issues myself too.
I’ve tried periods where I’ve reduced/ stopped supplements but then I notice symptoms returning so I realise for me, I need to keep taking them quite regularly, most days.
Having read Jane Mclellands book and ( how to starve cancer), Paul Mariks book on cancer care, Dr Thomas Seyfried on cancer as a metabolic disease, to name a few, I’ve added in the relevant supplements to block pathways related to ET. Try to cut out most rubbish from diet ( sugar, seed oils, obvious carbs, processed food, foods that might have been sprayed with glyphosate)
Feel great and lead a totally normal active and healthy life.
I’m more interested in finding the root cause and then dealing with that, be it diet, environment , toxins , parasites … Have no plans to ever take any medications generally recommended for ET, so I avoid all doctors. Haven’t seen one in 3 years.
Haven’t tried a water fast yet, but definitely considering it. Typically skip breakfast anyway so eat in a shortened period anyway.
Couple of other things to try in the future too when I’m less busy.
The tingling you mentioned might also have been B12 related as this very important vitamin is closely linked to nerve health and conductivity. Great book by Sally Pacholok, “Could it be B12?” Highly recommend it.
Vit D is super important too. From what I’ve read, pretty much every cell has vit d receptors, even platelets and megakaryocytes, so clearly important for good general health and normal cell function.
Bizarrely I discovered Jak2+ platelets have more than average number of mitochondria, so metabolic issues seem quite relevant in ET.
It’s quite a journey doing the research, I have loads of books / papers still to read and then plan to try to put it in some coherent order. But of course everyone is unique and what suits one won’t necessarily work for another.
Happy that’s it’s not just me who thinks this way 😁
I feel exactly the same way but do at times waver in confidence. So on one hand I don’t want chemo or anything like that and I believe I can be well on the other hand doubts creep in and I wonder if I should just trust Haemo (which I don’t). His answer is just take this and if this makes you unwell we give you this to help and then you might need this etc etc…….( I have worked in the pharmaceutical industry for 10 years I know how it works and it has made it soo difficult for me to trust any Doctor although I know there are some incredible ones out there but from what I have experienced the majority are not capable of individual thought they just follow generic algorithms).
I find it fascinating when retired editors of top medical journals write about all the corruption in medicine. How many of the papers are manufactured or manipulated and basically half of what you read is just not true, but you don’t know which half. Peter Gotzche has written about this too and countless more ethical doctors and professionals . Medical ethics has flown out the window. When gps and haematologist know practically nothing about vitamins, that’s a big problem. Their solution is always drugs , never trying to understand the root cause. Well I know for sure I’m not deficient in HU or any other drug they try to push . Equally I know for sure I was deficient in several vits that they actually have a test for and who knows about all the rest, and what about the minerals ! What about gut microbiome, parasites, mould, metal toxicity, chemical toxicity -as everything you put on your skin gets absorbed, but not everything has been tested for carcinogenic effects etc. so many other things that can affect health that are also ignored.
I used to work in nhs but since returning to live in uk I have not even registered with a gp. I have zero faith in the medical profession any more. (Wasn’t much better abroad either, although I could at least get a same day appt )
Having seen the way my mum has been treated over decades and other family members too, I want no part of it.
Quite happy doing my own research, checking multiple sources and staying away from doctors.
75mg /day and I’m not sure it isn’t the cause of my nausea…. However, been told not to skip it. 😀
It can Definitly upset your tummy. I have heard this over and over. Some people take it different times with different foods and have had success. My tummy has been good so far but I have only started on it. All the best 💐!
Thank you for acknowledging that.
Aspirin definitely upset my tummy, but it was more of an irritant than nauseating. Lansoprazole resolved this.
I thought that was an ulcer med.
in any case at my next appt my with Hemae I’ll be asking if taking the aspirin at bedtime might be an alternative- til now he’s been insistent that it should be at noon
Thanks for your interest.
It's a proton pump inhibitor. It's protects the stomach really well. I expect it prevents ulcers👍
Just be aware that proton pump inhibitors prevent you for absorbing vit B12 in your diet. Good to keep a check on this with regular blood tests and maybe prophylactic treatment. Hope your doctor is aware of all this.
I've had PV diagnosed since 2015 and was put on 75mg Aspirin. Never been told when to take, but as I'm also on drugs for Parkinsons during the day, I take my Aspirin and Hydroxycarbamide before bed. Interested in all the talk about B12 ... There's information I've been reading about B1 therapy for PD!! Go B Vitamins!
Yes ! Vitamin B has made such a difference to my symptoms ❤️All the best to you going forward 🫶
Diagnosed with PV in 2018, I have been taking 75mg enteric-coated daily since then, with pauses for e.g., tooth extraction.
Oh so even with a small procedure like a tooth extraction we have to stop it prior? Interesting! Haematologist told me it stays in the system for up to one week,
I have PV and take one 75mg per day.
Hi
I am also UK, I have ET , platelets at 900ish and take over the counter baby asprin so 75mg. It is much cheaper than getting it on prescription and it isn’t the water soluble one. I have always bruised easily so no change there.
I do get headaches on waking so am going to ask my Haematologist if I can increase to two a day because that seems to sort the daily pain behind my eyes. I am also on a low dose daily blood pressure medication to prevent the number of migraines/ visual disturbances I was getting in addition to the daily headaches. This has become more of an issue when my platelets rose from 600.
I wish you well.
Regards
Nicole
Interesting to read about your symptoms, specially the pain behind eyes as I get pressure build up, aches in my eyes , have done so for some time so that could be my high platelets! Amazing how there have been symptoms for some time but you just don’t put it all together in your mind but bit by it it starts to make sense.
Nicole, there can be other reasons for migraine visual issues, of which I had a lot. Thankfully these totally resolved with correcting my b12 deficiency. Of course plenty of other reasons possible too. Did you ever get your vitamin levels checked?
Thank you, yes in the past I have been low and it is a supplement I do sometimes take so thank you for the prompt to look again. Why are bodies so complex?😄
Ah, if you do get another B12 test done, be aware that any supplements you take/ have taken, for this can skew your results and make it look like you have sufficient. I’ve read that up to 95% of what’s picked up by the serum b12 test may be the b12 analogue version , and therefore not available for your cells to use. Symptoms are the best way to determine b12 deficiency and if these get better with supplements, then you are definitely b12 deficient.
Good luck!
it should be coated aspirin like Cardia
I take daily 100mg , no problems
Hi, I am 74 PV. I take 10 81mg asa per week. I weigh 240 lb, that is the reason for the 3 extra per week. Best.
Who knows what the best dosage is for us, my one Hematologist says only one per day the other says 2 per day, so I compromise. I read a medical article, can't remember where, but it said for preventing cardiac events with aspirin that 2 x 81mg was better for people weighing over 200 lbs. That is why I take the 3 extra per week, I figure it may save me or kill me, who knows. Probably best to follow your physicians advice. Best to you always.
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