MPN's and afib: Hi, Hi, I'm curious if anyone... - MPN Voice

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MPN's and afib

Elizka profile image
7 Replies

Hi,

Hi,

I'm curious if anyone has had afib after you were dx with an MPN?

I had it for the first time on December 1. Besremi was ruled out as the cause, so the cardio team

landed on age (I'm 64) as I have no structural issues with my heart.

We all know as MPN suffers we have higher risk for heart disease but I honestly hadn't focused on that since diagnosed in 2015. Other than working out, eating right, etc., to reduce risks.

Has anyone researched PV and Afib? There are a few papers on the subject, but if you are on Besremi to control your blood counts, does the risk go down?

It is so tricky getting clear answers when diagnosed with another condition when you have an MPN.

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Elizka profile image
Elizka
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7 Replies
EPguy profile image
EPguy

I've had a different category of palpitations starting 30 years ago. It has resumed since my Dx, but Covid early 2020 may also be part of it. Just went over the 2 week monitor with cardio yesterday. It looks sort of like this, two beats followed by space, but something I can't recall was different.

Dr says no worries for mine, because of the details on "Which parts of your heart are triggering contractions" in the reference here. So I'll just be annoyed but not concerned.

In your case Dr is concerned so the parts of your heart doing the triggering must be worth attention.

Your team is using this risk factor in this reference: "Age older than 50 years"

They note here three types of aFib. I assume some are of more concern than others. Has your Dr discussed these details?

hopkinsmedicine.org/health/...

Afib
Elizka profile image
Elizka in reply toEPguy

Hi there. Always good to get a reply from you. I have only had two episodes so I have paroxysm Afib. Yes, they are going with "age." The timing is very suspicious as the first one happened within a few days of my husband being discharged after open heart surgery. The second occurred during the stress test, and my heart was already racing at the thought of being officially labeled as having AFIB. Things have been very stressful in our house!

Hunter made an astute observation that perhaps because I had a few episodes of tachycardia years ago, along with panic attacks, I'm more susceptible to Afib? I've got some faulty electrical signals/nodes.

I'm making radical changes to my lifestyle, including losing a few pounds, cutting almost all sugar, increasing my meditation duration, and doing what I can to lower anxiety and stress. No more stressful workouts or HIT cardio rides for a bit.

I'm on the list for ablation, but it will take some time to get the procedure scheduled as they are booked for months.

Even with excellent healthcare, if you don't fit into a medical box, you don't always get clarity on cause or best path forward. The cardiologist isn't educated on PV. HEM refers back to the cardiologist. Very segmented as far as care.

I hope the halter provides some answers for you.

EPguy profile image
EPguy in reply toElizka

I think it's likely odds your afib started or increased from the stress. I've found such a connection with my non-afib. I did get clear answers from Dr that we won't worry about it or treat it unless it gets a lot worse. Thanks for asking.

My current huge problem is shoulder injury from vaccination, a badly administered shot I posted about last month. It suddenly got real bad last week. I've got agony at night and need to sleep partly upright. I hope the neurologist next week can do something. I also hope the Bes is not part of it. I just got blood tests and no surprises. One unwelcome benefit is I don't notice the regular IFN effects anymore.

MPort profile image
MPort in reply toEPguy

So sorry to hear about your shoulder pain after the Covid Vac. Most unfortunate. Sitting up trying to sleep sounds challenging. I hope you get help soon.

EPguy profile image
EPguy in reply toMPort

Thanks for the kind thought.

It was actually the flu vax, Flublok. The vax is not likely the problem, it's how it was performed. I posted on this as it is something we should all know but don't think about. Risk is higher for slim/skinny/small people (I'm one) but it can happen to anyone.

healthunlocked.com/mpnvoice...

I got the Covid vax in the other arm a week earlier, to be able to know which one might be the problem. That one did what it's supposed to, feel fluish for a couple days and get better.

vax location
katiewalsh profile image
katiewalsh

hi. I have afib & other heart rhythm issues. None are severe & may simply be because I’m 71. Can you please tell me the source for heart problems being more common in MPN patients? I’d not known this. Thanks. Katie

Mirror368 profile image
Mirror368

Hi Eliza,

I just am 78. I was diagnosed with Paroxysmal AFib several years ago. Interestingly, my PCP was following my platelets slowly rising during that time. My PCP finally referred me to a hematologist when platelets hit 621. When I saw the hematologist they jumped to 735. In June 2022 I was diagnosed with ET JAK2 after extensive labs and bone marrow biopsy.

I generally get maybe two episodes of AFib a year. My PCP gave me a “pill in a pocket” to stop the palpitations quickly….25 mg Metoprolol Tartrate which is fast acting and short living. I take it, totally relax, and palpitations stop in about two hours,

I take Eliquis…blood thinner for AFib, Hydroxyurea for ET JAK2.

Eileen

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