Hi all,
I’ve been having a few symptoms with PV (cold feet, dizzy spells) despite fairly normal bloods. Currently on aspirin and monthly venesections. I asked about doubling aspirin last appointment and the doctor said not to do that. But today a different doctor suggested I do it without me asking. So confused - does anybody else take more than a daily baby aspirin?
Hi Tim. It doesn’t help when you get conflicting opinions from the experts, does it?
Personally, I take one daily 75mg of dispersible aspirin. However, I do recall Professor Barbui (I think) discussing the possible benefits of twice daily low dose aspirin for ET/PV, it sounded convincing, but obviously not suitable for all. I think there may even have been trials in Italy, but haven’t heard anything on this since.
I have ET, so I don’t know much about PV, but monthly venesections seems quite extreme. Do you think there’s any possibility this could be contributing to your symptoms? ‘Hunter’ recently mentioned the adverse effects from venesection was the decider for him to begin treatment with interferon.
Thanks for this. Monthly venesections is a lot but it’s just for the initial spell before they become more spaced out. All about retuning your iron levels or something. Not getting any side effects that seem to come from the venesection. Think I will wait until next appointment to discuss further.
I’ve just noted your ET has transformed to PV, so the monthly venesections make more sense now. Hopefully, these will lessen significantly with time.
With regards to twice daily aspirin. Ideally, it would be helpful if you could have the reasons for the differing advise, so you can make an informed decision.
Good luck
Some MPN Specialists are now recommending low-dose aspirin 2x/day. Others are sticking with the standard 1x/day. Here is one of the studies in support of 2x/day.ashclinicalnews.org/news/fr....
I think the answer is more nuanced than any one-size-fits-all protocol. People with more of a history of thrombosis would perhaps benefit from 2x/day. People with no history of thromboses would be at higher risk of averse effects (e.g. bleeding, GI irritation) with no clear benefit.
It really depends on each person's individual profile.
Yes. I’ve had no clotting issue so surprised to be advised on upping dose
Some docs are now doing aspirin 2x/day as the standard. Others are sticking with the older 1x/day protocol. Suggest you do what you think best.
Why wait for a clotting issue? I'd rather have a bleeding issue (like, bruising, or a cut that's slow to stop) than a clotting issue (like a DVT or stroke). My doc has me on two 81mg aspirin a day -- but I'm now on the ET side, having started out with PV.
I'm of a generation that would pop 650mg of aspirin for a headache, fever, or ache and think nothing of it, so maybe I'm a bit cavalier.
If you're going to wait for your specialist's approval, see if you can invite them into a discussion rather than a black or white recommendation -- what can help with the symptoms I'm having? If I try 2 aspirins a day, what symptom should cause me to drop back to 1 a day? I guess a person could have random bleeding in their brain or retina, but I would think that would be foreshadowed by extra bruising, wouldn't it? Interesting questions that I think I'll take to my specialist as well.
(I started out my PV journey with 3 venesections in 5 days. I was going to go on a trip, had just learned about the issue, and I wanted this bad blood out of my system! Once a month after that, then down to every so often. Good luck with your journey.)
Thanks Sam and you make a good point - although I have some stomach issues and have already found two a day is giving me a bit of acid reflux so I might stick to one for now. Interesting about your venesections - I’ve just been upped to every three weeks. Don’t mind them but you have to traipse in to do the covid test then traipse back two days later for the procedure and that’s an hour journey each way for me! Thanks for advice and good luck with your ET
Hi TimYes I take 2 aspirin daily. On Peg 45mcg for PV JAK2.
I also have heart issues but not on any other blood thinners.
My cardiologist was quite happy with me doubling the aspirin on advice from my MPN specialist.
Guess we trust the experts….??
Rosie
Hi. The last time I asked Prof Harrison (in relation to reducing the daily aspirin dose as well as stopping in advance of surgery) - which was admittedly some years ago now - she said there whilst there was evidence to suggest too much aspirin had a negative effect there was no evidence to suggest too little aspirin had negative effects ie less is more. However, the evidence may well have moved on and also may be exactly as Hunter describes. Personally, with conflicting advice, I’d be reluctant to double the dose without questioning closely the evidence for doing so. Argh! Good luck!
Hi I was taking 300mg once in the morning as prescribed by my haematologist. After a consultation with Professor Harrison I’m now on 75mg twice per day. I have ET. I’m not sure about the reasoning behind it medically but have thought maybe it’s about a smaller dose spread out…? We are all individual cases. I hope you find what works for you.
I’ve been on a double baby aspirin since I was diagnosed a couple of years ago. Like Hunter said, I had a history of heart attack and stroke caused by clotting from my PV. Though in at least the latter case I had taken an aspirin that morning so not sure how much its helping. I think the Pegasys is doing the heavy lifting these days.
Hi, I take 2 81mg aspirins per day. I am PV 72. I do that because I read a study (I can't remember when or where) that said that people over 200 lbs needed 2 per day to prevent cardiovascular problems, MI's. It was not a MPN study it was one on cardiovascular disease. I am 6ft and 235 lbs right now, I was 255 lbs when I started taking 2, 4 years ago.My MPN specialist is ok with it. I did have some symptoms before taking 2 (dizzy spells) have not had any since. This is not any kind of advice whatsoever, I am just answering your question. Best to consult your hematologist or MPN specialist before making any decisions. Good luck to you going forward.
Thanks for this. I’m not against taking it but I don’t have any clotting history and I’m fairly slender weight wise so seems unusual advice in my case.
My husband is just on a baby aspirin a day 75mg . He's got post PV MF .
Hi Tim,I was diagnosed with ET around a year ago. At that time I had very mild symptoms I didn't know were related to ET, slight tingling in my finger tips with minor visual disturbances. At that time I started taking one 81mg aspirin a day and the symptoms subsided. As my platelets increased over the last year the minor symptoms returned as well so I started taking two aspirin a day and the symptoms subsided again. Recently ( last two weeks) I stopped the aspirin and started taking one 81mg of Vazalore to see if I can get the same benefits as aspirin. So far this has been working very well but again my symptoms are mild. Hope this helps.
Very helpful and interesting thanks. When I started aspirin my monthly migraines stopped. But now I’m getting vestibular ones so might be good to double my dose. Good luck with yours
My 1st Hem went with 2/day. My current MPN specialist said 1/day if one has no history of thrombosis or other specific risks which I don't recall exactly. I interpret this to mean dose may relate to specific individual risk. I have been on HU, if it's aspirin only that might change the advice.
The link from Hunter has some points
On one/day <<We found high absolute values and marked interindividual variability in serum TXB...twice-daily aspirin reduced interindividual variability in serum TXB>>
I take this to suggest some are fine on one/day but two/day is better to get a larger portion of the patients into a good place. Could be this matches my Dr's risk related dosing.
I have ET jak 2. I was diagnosed in 2008 with platelets around 600,000. My hematologist didn’t put me on aspirin. Only the normal drugs like hydroxyurea and anagrelide. My platelets went into the 300’s so, on my own, I stopped taking the medication. Well, not long after, I ended up in the hospital for 3 days with a blood clot in my spleen and platelets about 800,000. In the hospital, they started me on 81 mg aspirin once a day which I still take. The interesting thing is that I never got my platelets back to normal again, but I’ve never had another blood clot.
Actually now I have MF, having progressed a few years ago.
It’s a strange condition alright. Hope you’re doing ok at the moment
Hi. I am a 47 year old female with ET currently on aspirin therapy alone. I know your post is now a week old but I thought I'd contribute as I decided to take 75mg twice daily to see if it helped with symptom burden (one aspirin no longer fully suppressed symptoms).I had Read an interesting article in support of twice daily and decided to unilaterally take two and see what happened. It suppressed helped reduce symptom burden but I did experience bruising so i now take one 75mg in the morning and one half at night.b This works well. My first haematologist freaked out when I told him but the second seemed fine with it so who knows? I've been taking this for two years now.
Great info thanks. Yes I’ve heard different things from different consultants normally against two a day. I’m getting some digestive issues from two so might go back to one anyway
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