MPNU/ET/Aspirin

[Misty-3]

Hello all

It’s been a while since my last communication...hope everyone is doing well with all this added challenge of covid.

I was diagnosed as MPNU from the biopsy I did last year then my current Haema told me that I’m more ET.

I’m currently on 2 x 100mg aspirin as prescribed by my Haema.

I had an ultrasound recently to monitor other glands particularly the spleen (was found ok) but they discovered a lesion on my liver. Will be going for CT scan next week.

I was checking in the internet about possible causes of liver lesions. I don’t smoke or drink by the way. I found an article that shows that one of the side effects of aspirin is liver damage. I just want to know whether anyone has come across about this or experience the same. I’m concern about the dosage of the aspirin I’m taking. Is there anyone taking the same dose or higher?

My platelets crept up to 890 then came slowly down to 585 but currently at 621.

I also noticed that my sinusitis and tinnitus have slowly become worse but mostly towards the end of the day. I also found an article that says that tinnitus is also a side effect of aspirin. Aside from these and getting tired easily and being anaemic I have no other symptoms (that I am aware of).

I would appreciate any sharing. Thanks so much!

[Chaz1]

Hi, hubby has ET/PV don 75mg apurin once a day plus venesections. He has experienced tinnitus recently & we put it down to the aspirin & possibly his levels being a bit higher than usual. It seems to have eased as his bloods have improved but Haemo said it wasn't MPN related. Haven't had it checked because can't get a face to face appointment with anyone so if it gets bad again he'll try to get it checked. He always has his liver levels checked with his routine blood tests, have they been checking yours? That might help as well as the CT scan.

Are you on other meds to reduce your platelets? They don't usually reduce on their own & aspirin only refuces the stickiness. I'm assuming that yours is high level stickiness hence the higher dose. There is other options to aspirin in the form of blood thinners, can't remember the names of the top of my head but might be worth a change to see if helps

Hope CT scan results come back ok & the lesion turns out to be ok x

[Misty-3 in reply to Chaz1]

Thanks Chaz1. I’m not taking any other medication for my MPN. My previous Haema initially wanted me to take up Hydra but I was hesitant as my platelets were 585 and I did not have any other symptoms aside from getting tired easily. So she prescribed me with the 2 aspirin daily based on an American Journal of Haematology published in 2018. The tinnitus developed after around 3 months which started as very low sound and the sinusitis later which started as mild. Now they have worsened but towards the end of the day.

[Chaz1 in reply to Misty-3]

I'd consider a second opinion as Hydra for that level correct not to take unless previous thrombosis or other risk factors but aspirin in that dose isn't a good thing long term & isn't going to affect your levels. Some digging to see why they are.

[Ebot]

Hi there

2 x 100mg of aspirin? Is that per day? That’s quite a lot! 75mg is the standard prophylactic dose. Is there a particular reason why your haem has prescribed this? Aspirin will have no effect on your platelet count. It’s taken to mitigate the effects of the increase in ‘sticky’ platelets.

I once had a discussion with Prof Harrison about aspirin dosage - for various reasons over the years she advised taking aspirin on alternate days / stopping temporarily. (I’m now back on 75mg per day.) I was obviously concerned about dropping the dosage but she said that while there was evidence suggesting taking too much aspirin may be harmful there was no evidence to suggest that occasionally taking less aspirin was harmful.

I’d definitely want to question the haem as to why you have been prescribed this dosage particularly as you appear to be having side effects.

[Misty-3 in reply to Ebot]

Thanks I will definitely discuss with my Haema in my next appointment. There was a journal in America which had this 2x/day medication for ET under the medium risk category. But was thinking whether there are side effects of taking this dosage and I came across this write up that says that aspirin side effects include liver damage and tinnitus.

[Hidden]

I agree with Ebot. Never heard of anyone being prescribed that amount of aspirin and it can be very dangerous/lethal. Just google "deaths caused by aspirin".

The best amount to take is the 'least amount' necessary to control any symptoms, such as erythromelagia.

[Misty-3 in reply to Hidden]

Thanks Debra.

[Mwalimu]

The dose of aspirin seems high and will not bring the platelets down. I would be inclined to ask to see an MPN specialist. Many of us have found that a lot of GPs and haematologists are behind the curve when it comes to dealing with an MPN. Good luck with the CT scan - and persist. Sallie

[Misty-3 in reply to Mwalimu]

Thanks so much!

[azaelea]

I agree with our friends , the dose of Aspirin seems very high indeed and does not reduce platelet count. The normal dose is 75mg per day which I was on for 2 years until I recently had a GI bleed and the Aspirin was stopped. After 4 weeks of no Aspirin I developed a clot in my little toe so I'm now on Clopidogrel which does the same blood thinning as Aspirin, but still the dose is 75mg. I would definitely query your treatment with your Haemo or ask for another opinion. I'm presuming you're not on Hydroxy or any other platelet reducing drug. Take care and hope you get proper treatment.

[Misty-3 in reply to azaelea]

Thanks so much. I’m not on any other medication.

[Magentas in reply to azaelea]

Hi , how did you know you had a clot in your toe? And how did you know you had a GI bleed? I ask as I am on 2x 100 mg daily as well.

[azaelea in reply to Magentas]

Hi Magenta’s! I passed black stools and realised it was a bleed. It was right at beginning of first Lockdown last March so I couldn’t have a scan. Don’t know to this day where it bled from. Dr said upper region - would have been red if lower. As for my toe.....wow, I didn’t half know about that. The pain was excruciating especially in bed. Couldn’t sleep. Up every hour pacing floor. With being on lockdown it went on for at least 3 weeks before I had eventually to go to Haematology at hospital where Dr . Confirmed a clot. I was put straight on Clopidogerel because they said Aspirin was too risky if bleed was from stomach. I don’t think I should have gone without any blood thinners for the weeks after the bleed. I’m sure that caused the very small clot. Just had my telephone check up with blood test yesterday and pleased all bloods in excellent levels. One thing though, I have a painful bony lump on my wrist bone and Haematologist thinks it’s Gout - so treatment been prescribed for that next! She said people with MPNs do suffer with Gout sometimes. Hey Ho! Carry on regardless!😃😃Best wishes Fran

[Magentas in reply to azaelea]

Hi Fran, gee, thats a frightening experience you had during lockdown and on top of everything else but so glad you pulled through and your numbers are good now. Thanks for the info, I will ask my hem about Clopidogeral today as I know nothing about it. Get my bmb results this afternoon, too 🤞.All the best, you Brits sure put up with a lot! Jaqi

[azaelea in reply to Magentas]

Hi Jaqi, thanks for your reply. I hope all goes well for you this afternoon with your BMB results. These should tell you the mutation - I.e. JAK 2 + or - Etc.

I had a telephone consultation with Haemo Dr. On Monday and I’m very pleased to say all my blood results are good and normal. However she thinks the painful bone on my wrist is Gout and has sent through some medication. I’m not convinced as she hasn’t seen it obviously. Also asking my GP to change my water pills to different ones to try to get rid of swelling in feet and ankles!! Will see what happens. At least I feel OK other than aches!

I’ve just had a look at your profile and first post on here. I must have missed it somehow. Nice to be in touch now. Good luck. Fran xx

[hunter5582]

Liver lesions can be a wide range of things. Lesion can just mean "we see a something but don't know what it is." I have a hemangioma on both my liver and spleen (and all over my skin). These are in no way a health threat. Having a MPN does mean we have a broader propensity for other neoplasms, so definitely get it checked out, but try not to worry too much about it. Many of these liver lesions are something benign.

Tinnitus can definately be related to the MPN directly. it is fairly common. This is well documented in the literature. Here is just one example. there is more

researchgate.net/publicatio...

Your mention of anemia sounds like part of the overall picture. Are you referring to iron levels or the red blood cell counts? Note: iron deficiency and anemia are not the same thing.

I do hope you get answers re. the liver lesion ASAP. While it may be not big deal, better safe than sorry when it comes to this sort of thing. Do let us know how once you find out what it going on.

[Misty-3 in reply to hunter5582]

Thanks Hunter. Actually I should say iron deficiency. I have been taking iron supplement for more than 6 months now. Will update once I get results.

[hunter5582 in reply to Misty-3]

The iron deficiency is actually more complicated than I realized it was. Found out due to my own PV treatment with phlebotomy and being over-phlebotomized. Regarding RBCs, iron deficiency is a good thing for PV/erythrocytosis (as long as not too severe). However it can drive up platelet levels. With MPNU - it would be a real crap-shoot. FYI - I absolutely HATE iron supplements. They make me constipated as heck (ck = ll). I would rather be iron deficient! That last year on HU seems to have messed up my intestinal endothelium in a long-term way so now this is an issue. Oh well - so it goes.

Do let us know how it goes.

[Misty-3 in reply to hunter5582]

Yeah, my iron deficiency I’m wondering, I started once a day tablet but my Haema was concerned about it to affect my stomach so now it’s every other day...it’s a little better the iron level but just made it to the minimum. My transferrin is still very low.

[Andyls]

A few years ago, I had an abdominal scan where they discovered a lesion on the liver. My MD told me that it was very common, and usually turned out to be nothing to be concerned about. Sure enough, after a secondary scan, that was the case. As for the aspirin, as of about 3 years ago, in the US, it became standard to prescribe low-dose aspirin BID (ie, one pill twice each day) for ET. Aspirin has a short half-life, so the theory is that if you only take it once a day, there will be a period where it is no longer present. My hem said that ideally, one would take one aspirin every 17 hours or so, but that wasn't very practical. In the US, low dose is 81 mg, but 100 is certainly less than the standard 350 mg, so I assume the 100 mg is standard where you are. If you are particularly sensitive to aspirin, it could be an issue with your liver, but I wouldn't be unduly alarmed about the dosage until they investigate further. I hope you are able to have further testing soon.

[Misty-3 in reply to Andyls]

Thanks so much for this. My Haema based it on an American Journal of Haematology re: 2x aspirin/day. So, is it still current standard in the US to prescribe this for ET? Have you heard of any side effects? Sorry for asking too much. I am based in Australia and I could not find so many information. Or maybe I’m not just looking in the right places.

[hunter5582 in reply to Misty-3]

Just saw you are from Down Under! Have a nephew ex-pat currently living in Sydney. If you have not already connected, our pal Socrates runs the MPN-Mate forum in Australia. I do hope to get there at some point as I want to travel the Outback and go on walk-about. Also want to see New Zealand. If I ever get there - I will give a shout!

[Misty-3 in reply to hunter5582]

Yes I have been in touched with him...though I’ve always missed the catch ups. Hopefully COVID will go away so you can come. NZ is also very nice. Was there during the volcanic eruption last December. I was with my family in the Ovation of the Seas. It was quite an experience!

[hunter5582 in reply to Misty-3]

Standard practice in USA for ET is 1 low dose aspirin / day for ET for most people. There is variance in the practice - some use more. Depends on your hx of thrombosis. Some docs always try to normalize blood counts no matter what, even though there is no evidence that it matters (per the MPN expert doc I consulted with). Dr. Spivak does not favor "sanitizing" blood cell numbers. He looks at each patient's profile and designs treatment based on that patient's profile. Cytoreduction is only done when there is a reason to do so. He does not favor the use of hydroxyurea due to its risk profile.

Here is a very interesting presentation by Dr. Spivak on ET. While he is one of the world's leading MPN experts, note that not everyone agrees with his views.

youtube.com/watch?v=hbVr9u3...(Not working as expected?)

To answer your question re. aspirin side effects - yes I did have them. I have GERD, so the aspirin likely contributed to the gastritis I have experienced off and on. More significantly, I experienced excessive bleeding and bruising when on aspirin. The hemorrhaging was getting progressively worse as time went on. Despite being Age>60 with PV - the MPN expert doc took me off aspirin. He said my risk of bleeding was greater than my risk of clotting. Dr. Spivak prophetically stated "you really do not want to get a brain bleed." Two weeks later, the docs found a hemorrhagic tumor in my brain. So - yes to aspirin being a problem for me. That does not mean you should not take it. Do be aware that for some with MPNs it is actually our risk of hemorrhage that goes up rather than thrombosis. If your doc has not run a von Willebrand panel, you should have one done - especially if your platelet levels make it up into the 800s. You should also be aware of what your prothrombin times are (ptt/aptt - INR). Mine used to be consistently outside (too long) of the normal clotting time.

I am inferring your current hematologist is not a MPN expert. Most are not. If you like this doc, then I would suggest adopting the approach I take. I have a local hematologist who is a great doc. I really like him, but he is not a MPN expert. He handles my ongoing care. I consult periodically with a MPN-expert doc who is two hours away. The MPN expert-doc consults on my case and advises us on my care. I found that doc on this list, that does include some docs in Australia mpnforum.com/list-hem./ .

So another long answer to a short question. Depending on your profile, a low dose of aspirin likely does make sense; however, aspirin is not an entirely benign substance. It too has a risk/benefit profile.

Hope that all helps

[Andyls in reply to Misty-3]

I believe this is still the practice here except for younger patients with minimal cardiovascular risk. The original study it was based on was presented only about 2 or 3 years ago and presented at one of the major conferences. There have been a few other studies since - nothing definitive, but all pointing in the same direction. They do NOT recommend doubling a once-a-day dose. In my case, after I had a cardiac stent inserted about a year ago, my cardiologist and Hematologist consulted and I now take clopidegrel (a blood thinner) in the AM and one low dose aspirin at night. I have not had adverse side effects to either the aspirin BID or the combo. There are side effects to everything, and we all have different drug sensitivities, so it is something to watch. Also, keep in mind that aspirin does nothing to bring down platelets, it just acts as an anti-aggregating agent to help prevent clots. Since prevention of cardiovascular events caused by clots is the main goal of treatment for ET, you have to weigh your individual risks of the side effects of aspirin vs. your risk of a CV event. Oh, and just yesterday, I read a report of a study indicating that aspirin seemed to be effective in preventing the kind of clots seen in Covid-19. The study was primarily a lab/test tube study, but at least some doctors are now thinking of adding it to treatment for hospitalized patients.

[Magentas in reply to Andyls]

I too am in Australia like Misty and have been prescribed 100mg twice daily (no HU etc, only erythema and fatigue and waiting on BMB results) I must say I was relieved to read your reply after reading other previous replys so thanks for that info!

Oh, now I’m confused, I just reached your second comment and it says they do not recommend twice daily.

[Misty-3]

Thanks so much for all this information!