Stopping Aspirin?

[love0826]

Hello Everybody,

I am taking Hydroxy and baby aspirin daily for PV since 6 years and was told by my doctor to always keep taking the aspirin. A couple of months ago I had to discontinue aspirin for a procedure, which worried me, but it was ok.

But I saw articles online how dangerous it is as of lately, to take aspirin daily because of increased bleeding risk. Now I have a new hematologist and she tells me to stop aspirin right now, because my platelets are fine (400) in this hot minute and may be continue when they go up next time.

Something tells me not to do that....that's why I am curious, has anybody suspended aspirin and/or takes it on and off?

Thanks so much for any shares.

[hunter5582]

Yes. My MPN took me off aspirin because I was age > 60, which aligns with the changed American Heart Association recommendation regarding the hemorrhage risks of aspirin in people age > 60. I had in fact been experiencing a significant increase in excessive bleeding and bruising. The doc said "You really do not want to get a brain bleed." Two weeks later, I was diagnosed with a hemorrhagic brain tumor. Ooops!

After being off aspirin for a couple of years, I started experiencing erythromelalgia in the feet. I went back on aspirin (40.5mg qd), which stopped the erythromelalgia immediately. Ultimately, I returned to the standard 81mg dose. I am doing fine on it.

Aspirin is no different that any other treatment choice we make. We each have to weigh the risk/benefit profile. We each respond differently to it. The main risk is of increased hemorrhage (bleeding/bruising), particularly as we age. There is also risk of GI issues and a hemorrhagic stroke. Those risks have to be weighed against the very real risk of thrombosis when we have MPNs.

Suggest you review your question with a MPN Specialist so you can get a case-specific answer.

[love0826 in reply to hunter5582]

Thank you hunter. Yes, I need to find a good MPN specialist.

[ainslie]

I think you’re wise to question what your new doc is saying, as far as I am aware it’s not that relevant that your platelets are 400 re taking aspirin or not. It’s how sticky they are , us with MPN. Have sticky platelets. Some with MPN can’t take aspirin but from what you’ve said so far it doesn’t sound as if you are in that category. The main cause of death with MPN is thrombotic issues. If it were me I would be seeking a second opinion ideally from a MPN expert.

[love0826 in reply to ainslie]

Thank you for this. Exactly what I thought, it is about the stickiness. The doctor is a hematologist, saying she has vast knowledge of MPN, but I agree, I must find a MPN expert.

[westlieght]

Just last week asked my specialist if I should stop aspirin said no am ET-MF 16years on aspirin . Hope this helps .

[love0826 in reply to westlieght]

Thank you for sharing this. This hematologist is the first doctor that suggested stopping the aspirin. It seems there a many ideas we can put in our head...I need to find a specialist.

[Grendall]

Hi there,

Just the last few days i had an episode and had some bleeding from my back passage. Went to hospital all my bloods appeared ok but since taking aspirin I have appeared to to felt GI issues (had to start lanzoprazole also) but they have told me to stop taking aspirin for now. I have my Heam appointment next week so they have told me to speak to him 🤷‍♀️🤷‍♀️🤷‍♀️

[love0826 in reply to Grendall]

Thank you. I hope you feel better very soon.

[MaggieSylvie]

Hello love, My condition involves proliferating platelets, and I have had the same thoughts about discontinuing aspirin. I recently grazed my arm and had to put a plaster on because it wouldn't stop bleeding (it's healing now). My Haem says aspirin is advisable because of the danger of clots. I don't get it.

[MaggieSylvie in reply to MaggieSylvie]

Yes - stickiness of blood. Well, that would never have been discovered if my symptoms hadn't lead to the diagnosis of RARS and additionally thrombocytosis. So I had a lot of platelets but no reason given as to why they might be sticky.

[love0826 in reply to MaggieSylvie]

Thank you. Yes, there is no one real answer I feel. Each case is different and all the shares help me to understand that.

[Indigo42916]

Hello,

I have been on low dose aspirin for 9 years with ET, no problems.I do see an MPN specialist, and expect to stay the course. It is important to keep in mind, these broad recommendations may not be appropriate for us.

Our platelets are defective, and may be giant and not function normally. I would certainly suggest seeking an MPN specialist opinion.

Take care.

[love0826 in reply to Indigo42916]

Thank you for sharing your experience. I am looking for a specialist.

[AnBee]

I am unable to take enteric coated aspirin. It always affects my GIT. I had a clotting test that showed normal clotting times. Post ET MF On Pegasys.

[love0826 in reply to AnBee]

Thank you AnBee.

[Ashtin]

Just to piggyback this topic,is coated or chewable the preferred aspirin?

[AnBee]

yes but even that ( it’s called enteric coated) strongly and quickly affected my stomach ie severe pain and burning.

[Innessant]

My situation is similar to yours. Aspirin (acetylsalicylic acid) is the oldest (1859) medication to have been formulated. It is a modern miracle and has helped millions over centuries for many health problems.The "side effects" affect a few percentage of users only. In my opinion you would be foolish to stop this without an obvious cause as Hunter said.

[love0826 in reply to Innessant]

Thank you. It seems that fear is always in the mix too. I am not downplaying things and cases, I am just speaking for myself. I haven't stopped the aspirin and I am working on finding a good MPN specialist. And I also continuously remind myself to stay calm, because there is only so much we can control...