MPN and palpitations

[Fivecatsandcounting]

Good evening. I'm interested to learn if anyone else gets a lot of palpitations? It's been an issue in and off this year but a lot worse lately. I've had heart scan and ecgs which are normal but they won't go away. I I inject with 90mg PegInterfron weekly (8 weeks in) and an aspirin daily. Wondering if worse due to the drugs or the condition (PV JAK2+) platelets down to 1200 now and red/white cells above normal but not too much so. Any tips on making them go away! I don't drink, smoke or drink coffee. A little tea and mostly water. Not really sure what to do next .. consultant or doctor or just put up with them.

[hunter5582]

Palpitations can be related to the MPN or a separate issue. Regardless of the cause, it is something to have assessed sooner rather than later. It could be s sign of a minor arrhythmia that would be easily addressed. It could be a sign of something more serious that needs to be addressed. This sort of symptom is not something to just ignore.

In the context of a MPN, any issue with cardiovascular system is something we cannot afford to ignore. I have an arrythmia that required surgery, a catheter ablation. The surgery was successful but I still have minor episodes. i consult with a cardiologist and my hematology care team about this issue.

Here is a bit of information you may find helpful.

my.clevelandclinic.org/heal...

ncbi.nlm.nih.gov/pmc/articl...

[Fivecatsandcounting in reply to hunter5582]

Thank you Hunter really helpful. I was referred to a cardiologist and had scan and ecg and all seems ok. I have been on a drug to slow my heart down for years but that wasn't mentioned and I'm still taking that. I suppose it could be related to my bloods but no one has actually confirmed anything. I've called the Haematology nurses and left a message so hope to hear back on what I should do next. Does make me feel a bit rough at times. Thank you for sharing your experience it really helps.

[hunter5582 in reply to Fivecatsandcounting]

The palpitations may well be related to the arrhythmia: however, it could be something exacerbated by the PEG. It would be best to follow up to be sure you know what is going on. It could be something very minor like an ectopic heartbeat. Here is a bit about that. nidirect.gov.uk/conditions/....

Given the irregular nature of the palpitations, a single point-in-time ECG may not detect anything. Wearing a monitor for 1 - 2 weeks may be more revealing. I recently did this due to a change in symptoms (minor tachypnea episodes). The new type of monitor is much easier to deal with than the old holter monitors. It is just a large patch that you wear on your chest. It connects to a cell phone that uploads tha data. The monitor runs 24/7 and records everything. In my case it confirmed that I was having minor brief episodes of tachycardia (up to 13 beats). It also confirmed the type of tachycardia (atrial tachycardia with one reentrant tachycardia episode). The tachypnea episodes have not recurred and our conclusion was that it was a transient Besremi side effect. While that is what I figured it was, basing the conclusion on hard data was the best approach.

Note that I also use a Kardia device (the newer 6-lead version). I am able to take my own ECG when any kind of tachycardia episode occurs. I share the ECGs with my cardiologist when we meet. My current episodes are very minor and not a big concern, but I am at risk for progression into A-FIb, which is why we monitor. I also wear a smartwatch that monitors heart rate and can take aa single lead ECG. While I do not actually think much about the arrhythmia, I can afford to not think about it based on having data that informs me and my care team about what is going on. store.kardia.com/products/k...

Wishing you all the best as you move forward.

[JustKeepSw1mming]

Hi Fivecatsandcounting,

I have also had issues with palpatations and arrhythmia, which woke me up at night etc. My gp did an ecg. I had an arrhythmia of 105, but and said my heart was fine and that it must have been a side effect of Interferon. I haven't had as many issues since I got off it, but I am still keeping an eye on them and will insist on a referal to a cardiologist if they come back.

As Hunter said, we have to be so careful.

Hope your doctors find the cause and treat it.

Take care

[Fivecatsandcounting in reply to JustKeepSw1mming]

Really interesting thank you. I am in drug to slow heart down so the scan and ecg would just see normal heart rate. Maybe the bloods are causing it. Has been happening all year (one of the reasons I had a private health check that flagged up this mpn) and only been on interferon 8 weeks. It's definitely getting worse though. But scary when it really goes isn't it! Made me feel quite rubbish last night hence me posting about it. It woke me up this morning after a good sleep so don't think its anxiety. Have called the hospital now just to see what they think again. Hope you're doing ok ☺️

[Hopetohelp]

I occasionally get heart palpitations. Before being diagnosed I would sometimes get them quite badly. They gave me a 24 hour ECG tape and said they weren’t of the dangerous kind and believe it or not they never came back as badly. In my case they were related to stress and got worse the more I thought I was going to have a heart attack😂. You need to get it checked out though and sometimes confirmation that they are of the okay kind can help reduce the anxiety they cause. I recommend one of those monitors strapped to your body so they can check what is happening if you can get your doctor to agree

[Fivecatsandcounting in reply to Hopetohelp]

Isn't that just typical lol I didn't have any when they were doing the scan! Thanks for the recommendation that sounds like a good plan. Reassuring if nothing else. Hope you're ok now!

[Anag]

Hi, I was having palpitations every time I took Anagrelide, and eventually those became worse and worse over the years. Spurts of high blood pressure threw me into the hospital a few times a year, and sometimes my heart would go into tachycardia for up to 70 minutes beating 180 to 200 permanent the whole time. Once I switched to Besremi a year ago, all of that went away and my blood pressure is down to 110/70 perpetually except when I’m exercising. 😁

apparently the anagrelide was blocking the signals from the vagus nerve, which helps the heart to regulate its self. My pulse is now stable at 68 resting rate, compared to the 85-90+ in the last few years before Besremi.

Result of 6 years Anagrelide is mitral valve insufficiency between stage 1 and 2. 🫤

Other reasons for heart palpitations.

nhsinform.scot/illnesses-an...

[Exeter21]

I have been getting them recently at night . I am on Peg dose 45 monthly . I stopped my aspirin for a few days & they stopped so feel it’s more related to that with me . I will see if anything alternative I can have when I speak with MPN .

[Nerjalover]

hi, the only time I incurred palpitations ( together with breathlessness and chest pain) the latter you may not experience- was when a general haematologist put me on Anegralide. I then had a heart attack after 6 months of complaining each week to the hospital as I was on weekly bloods - that the drug made me feel ill- with all 3 symptoms! I asked to see an MPN specialist after that and he told me I was Anegralide intolerant and that he personally did not like the drug!

So if you are on Anegralide please mention this to your consultant .