Friends, I apologize for the typo in my earlier post of today. The aspirin report was issued on April 26, 2022, not on April 26, 2002. I acknowledge and thank both Otterfield and Hunter for their replies.
Aspirin report : Friends, I apologize for the typo... - MPN Voice
Aspirin report
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Glad you caught the typo. You can edit it in the original if you wish.
I can add some nuance to the original answer. The American Heart Association had previously amended the recommendation for routine use of aspirin for people are we age unless there is a risk factor present. As we age our risk of hemorrhage increases due to aspirin. The risk benefit analysis is not favorable for many people. MPNs do count as a risk factor, especially if you have a history of thrombosis.
I had a history of excessive hemorrhage while on aspirin once I got nearer age 60. It was worse when my platelets were higher. Back in 2019 (age 63) the MPN Specialist took me off aspirin saying "You really do not want a brain bleed." Two weeks later I was diagnosed with a hemorrhagic brain tumor (now resected). I went without aspirin for two years until I started getting the PV related pain in my toes and feet (microvascular symptom). I chose to go back on a very low dose of aspirin (40.5mg - 1/2 of a chewable)). The symptom stopped immediately. My risk/benefit factor had shifted again.
Whether you should take aspirin at this point is based on your unique MPN profile. You have to know how your body is going to react. Also know that the higher the level of platelets, the higher your risk of hemorrhage - not just thrombosis. There is also a matter of which risks you prefer to take. This is not a black and white decision.
I believe Otterfield suggest a consult with a MPN Specialist. This would be a very good idea as most hematologists do not have the KSAs to provide optimal MPN care. The MPN Specialist can review the advantages and disadvantage of each of your choices. Ultimately, you are the only one who can make the decision.
All the best.
Hello , since we are on this subject I had a question about aspirin myself. I have been taking one baby aspirin a day since diagnosed with PV in 2013, im just very confused because my mpn specialist and ny hematologist both say different things to me. My platelets are 1.3 million right now and one says to stop aspirin over a million and one says do not stop the aspirin . What am I suppose to do? I took it upon myself to take it 3 days a week because I dont know which way to go. I’m also on bydroxyurea and Besremi as well.
Not all docs agree on this issue. The issue is that at platelet levels that high you are at increased risk of hemorrhage. In the absence of more information, I would go with what the MPN Specialist says.
Your decision would be better informed by more information. There is a risk of Acquired von Willebrand Disease ( a bleeding disorder) at platelet levels that high. You should have already had a von Willebrand Panel done (measures von Willebrand factors). You should also have updated prothrombin times (ptt/appt-INR - time blood takes to clot). This would give the information to determine if you have Avq-v-WBD. Note that it is also possible to have a significant increase in risk of hemorrhage at high platelet levels even in the absence of a full blown Acq-v-WBD.
I have noted that I experience a more subtle increase in hemorrhage when my platelets get above 800. There is evidence in the literature to support increased risk at this level. I would expect the issue to be worse above 1 million. The oddity is that the risk is for both hemorrhage and thrombosis as well as for microvascular symptoms.
Your individual history is also a factor in making a decision. Do you have any history of thrombosis? Do you have any history of hemorrhage (excessive bleeding/bruising)? What co-occurring medical conditions are present? All of this needs to be taken into account. There is also your history in the labs that have been done, including CBCs, vWB Panel, prothrombin times.
Your confusion is understandable given the conflicting advice. You really need more information to make a good decision. Splitting the difference is one way to go. I did something similar when i experienced microvascular issues after being taken off aspirin. I took 40.5mg aspirin each day (half of a chewable 81mg tab). This provided a more steady state of aspirin protection and relief from symptom.
I would suggest going back to the MPN Specialist for a more specific review of your history and the reason for the recommendation about aspirin. The indicated labs may have already been done and be a part of the recommendation. If not, that testing should be done to better inform your decision.
All the best. Do please let us know how you get on.
Hey Hunter,I found your reference to micro vascular symptoms interesting I have post PV MF and have been doing really well on Ruxo and mini aspirin for nearly three years now. No problems with spleen or itching. However, I have recently developed problems with my feet which include very hot,, sore soles and painful toes. I gather from what you wrote that returning to daily aspirin helped you with these symptoms (albeit at a lower dose). I’m on 75mg daily. No problem with platelets to date. I would be interested to know if anything else helped you get rid of the micro vascular symptoms in your feet or have they become an ongoing problem?
I’d be so grateful if you had any wisdom on this.
Best wishes,
Ettiel
In my case, 40.5mg/day of aspirin (1/2 dose of 81mg tab) is all that it took to resolve the burning pain in feet/toes. Some people find that it takes low-dose aspirin two times a day tp resolve symptoms. Some docs now routinely recommend this dose for some patients. Suggest you review this issue with a MPN Specialist to get specific advice in your situation.
Thanks for your reply Hunter. Sounds like a solution - hopefully. I’ll speak to my Haematologist about this at our next meeting. All the best,
Ettiel
Hello again Hunter I am sorry to hijack this post but I have been very interested in all the information. I am now 80 and when I was about 60 I started to get migraine sometimes with just aura and no pain and sometimes both. I was also getting some numbness on the side of my cheek. My own doctor was absolutely no help and my husband took me to the London Migraine Clinic where they said platelets were clumping together and causing migraine. They started me on low dose aspirin (75 mg) daily and from getting maybe four or five auras daily I only got about two a year for many years. I think on looking back this might have been the beginning of ET/PV which was only diagnosed a year ago. My platelets had apparently been raised for about three years but not high. My doctor did not investigate this until I had had a large clot in my leg and then three clots in my lungs within a few months. What interests me is that when I was diagnosed ET/PV I was told to stop my daily aspirin completely and was started on hydroxycarbamide 500 mg. daily a year ago. This has successfully brought levels back to normal. I have also been taking rivaroxaban since the clots at 20 mg. daily. However, when I stopped the aspirin I developed a migraine within 7 or 8 days. (I think aspirin remains in the system for about 6 days). I started the aspirin again and on my next visit to haematologist was told again not to take aspirin. Again I developed the migraine after a week.
I have been taking half an aspirin every other day and this seems to be keeping migraine away. This is unbeknown to doctors and I know it is at my risk. However, when I take a migraine I also get inability to speak properly for up to a few hours which is scary. I feel, therefore, that taking the aspirin is worth the risk. It is such a small amount but I read somewhere that it does not take much aspirin to do the trick.
I wonder what your thoughts are on this. The haematologist just would not listen when I tried to explain about the migraines and said the hydroxocarbamide and rivaroxaban would work to prevent migraines. Sorry for the long dissertation but I always feel guilty taking the aspirin without their permission.
Sorry to hear about the migraines. They are quite bothersome and are an issue that needs to be addressed. Migraines in MPNs are typically a microvascular issue caused by blood cells “sticking” to the vascular endothelium. This is not the same things as blood cells sticking to each other and forming clots. The process of hemostasis is complex and occurs in a series of steps. See below for the video that explains this process.
The answer to your question is a bit long.
Rivaroxaban and aspirin are both “blood thinners” but they work differently. Rivaroxaban is an anticoagulant medication. Aspirin is an antiplatelet medication. Here is a brief explanation of the difference. “Anticoagulants, such as heparin or warfarin (also called Coumadin), slow down your body's process of making clots. Antiplatelets, such as aspirin and clopidogrel, prevent blood cells called platelets from clumping together to form a clot. Antiplatelets are mainly taken by people who have had a heart attack or stroke.”
medlineplus.gov/bloodthinne....
From epocrates.com
Rivarobaxin - Mechanism of Action
selectively blocks active site of factor Xa, inhibiting blood coagulation (factor Xa inhibitor)
Aspirin - Mechanism of Action:
non-selectively and irreversibly inhibits cyclooxygenase, reducing prostaglandin and thromboxane A2 synthesis, producing analgesic, anti-inflammatory, and antipyretic effects and reducing platelet aggregation
Here is guidance from NICE in the UK on rivaroxaban and aspirin together.
“In latest guidance, NICE recommends that rivaroxaban can be used in combination with aspirin plus clopidogrel, or aspirin alone, for preventing atherothrombotic events in people who have had an acute coronary syndrome with elevated biomarkers.”
nice.org.uk/news/article/ni...
Do note that there is increased bleeding risk when you combine the two medications, but it is not contraindicated.
Monitor/Modify Tx
rivaroxaban + aspirin
monitor bleeding s/sx: combo may incr. risk of GI or other bleeding, incl. life-threatening (additive effects)
online.epocrates.com/intera...
It is also worth noting that hydroxycarbamide does tend to reduce microvascular events in addition to the antimetabolite action (reducing number of platelets). While the hematologist may be thinking this should be enough in addition to the rivaroxaban, it is clearly not enough in your case. We are not all the same in how our bodies respond to these medications.
It sounds like the hematologist you are seeing is concerned about the increased bleeding risk associated with the combination of medications. Many docs practice defensive medicine and would be reluctant to recommend concurrent use of the medications you need to prevent migraine. The problem is compounded by the fact that most hematologists lack the KSAs to provide optimal MPN care. They simply do not have enough experience with how these rare disorders can manifest.
You cannot tolerate repeated migraines. You do need to keep them in check. Accepting a certain degree of risk to control all the symptoms is a reasonable approach to take. However, I would recommend telling your care team what you are doing. They need to know what you are doing even if they do not entirely support your decision. Do note that I would do the same thing you are doing, accepting that it is my decision to accept the intrinsic risks.
My suggestions would be.
1. Consult with a MPN Specialist ASAP. A regular hematologist will not have the KSAs you need to manage your case. mpnforum.com/list-hem./
2. Consult with the Migraine Specialist again. I would ask the migraine specialist about CGRP inhibitors, which are very effective in preventing/reducing migraines (I use one).
3. Insist that the MPN Specialist and Migraine Specialist collaborate.
4. Politely make it clear that your care team’s role is to advise/consult. Your role is to decide. It is your treatment goals, risk tolerance, and preferences that will drive all decisions. You may need to make it VERY clear that controlling migraine is just as important as controlling thrombosis/hemorrhage. Also make clear that you accept a degree of risk in order to achieve the goal of controlling migraine.
5. Do your homework on the issues you are facing. Present as an educated and assertive patient. You will receive higher quality care this way.
Hope this helps get this sorted out.
Excellent video on hemostasis
youtube.com/watch?v=SGzp9wq...
Hunter, what are your thoughts on nattokinase as an alternative to aspirin?
I do not know anything about nattokinase so really can't make any suggestions about its use. I would stick with aspirin unless there are with issues tolerating it.
I did look at nattokinase just now and it does look interesting. Perhaps you can do some more research and let us all know what you learn.
I will make a post about it in the coming days
Thank you so much for your very detailed reply. I perhaps should have made it clear that when I take this very small amount of aspirin I rarely have a migraine but if I stop aspirin I get one about a week later. Obviously the aspirin is keeping this in check. I do not think I need anything to prevent migraines. I am 80 yo and already on opioids for back pain, double sciatica and severe restless legs syndrome. I like to keep my medications to a minimum if I can and I think hydroxy, rivaroxaban and oxycodone are probably enough to be going on with at my age!!
I do not know the situation here in Northern Ireland regarding consulting an MPN specialist. We do not have one in Northern Ireland and I would not be able to travel to England. I am treated at a hospital where I think there are four haematologists who consult with each other about their patients.
On my appointments I have tried with three different doctors to tell them about my experience if I do not take aspirin, and I am always met with the reply that they do not agree and I should not take aspirin. This is why I have not said that I am taking this very small amount. I just cannot risk the migraines which cause me such annoyance with the inability to speak. I will, however, mention that I take it at my next appointment which is in a week.
I have not had a heart attack or stroke in the past - just the blood clot in my leg and small ones in my lungs. I was originally put on a different anticoagulant but seemed to have more side effects and was put back on rivaroxaban. To my knowledge I do not have any heart trouble. In your own opinion do you think this very small amount of aspirin would increase the bleeding risk very much. I see you say you would take the risk and this is how I feel.
Your answer is very informative and I thank you for all the time you have taken. I tried to watch the video but unfortunately I cannot hear it (a bit hard of hearing).
I had posted up about being on buprenorphine pain patch and that it did not seem to be getting absorbed properly in the last six months. I started on hydroxycarbamide one year ago and felt this might be causing trouble absorbing the opioid. I have consulted with two different pharmacists and they both agree that this is quite possible although not having met with it. This is probably not surprising as our MPNs are not that common. However, I consulted with a Professor of Neurology in London and he has suggested stopping the patch and changing to oral oxycodone which I am in the process of doing from to-day. You had asked me to let you know if I found anything more out about this matter.
With thanks again
For what it is worth, I do think you are making a reasonable choice. There is a small increased risk of bleeding by adding the 40.5mg of aspirin every other day, but I would agree that it is worth it. I would just tell the docs what you are doing so they know. They do not have to agree with your choice. They are not the ones in pain. Your body - Your choice. I would point out to them that it is recognized that it is acceptable in certain circumstances to combine aspirin and rivaroxaban. I will sometimes print out information and give it to my care team if needed.
Others from Northern Ireland have noted that there are no MPN Specialists there. I am not sure how tele-medicine consults work, but I wonder if you could set one up with a MPN Specialist elsewhere in the UK.
I would note that buprenorphine is available in oral form.
Dosage forms: SL TAB: 2 mg, 8 mg; INJ: 300 mcg per mL
This may be an alternative to oxycodone. I would review all of the options before deciding.
Hope you find relief soon.
Thank you hunter. I intend to say about the aspirin at my next visit. My doctor would not prescribe the tablet form of buprenorphine - just completely refused and no reason given. Hence my phone consult with Prof. Walker who says he wants me to try back on oxy and if that is not suitable then he has stated I should have the bup tablets. Good Wishes
It really is not appropriate to receive no explanation for decisions. Youi have a right to know. If it is an issue with the formulary, then the doc should just say so. Not sure why oxy would be preferable to buprenorphine. Seems like the oxy is a higher-risk medication to me.
Hope you get it all sorted soon,
Hey Jelbea,
There is an MPN Specialist in Dublin if that’s of any help to you. She is Dr Eibhlin Connealy at St James’ Hospital.
Every good wish.
Ettiel
Thank you Ettiel - I have taken a note of this. It is so good of you to contact me and I appreciate this. I hope you are well.
Thanks Hunter , you always make me feel better. Thank you again for all your advice. You are so knowledgeable in this disease.
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