Heart Palpitation: Hi everyone, Anyone encountered... - MPN Voice

MPN Voice

10,834 members15,131 posts

Heart Palpitation

swess profile image
12 Replies

Hi everyone,

Anyone encountered heart palpitation for ET calr +ve?

Lately I had palpitation and went to seek help from doc. After various checks it showed nothing but need to follow up with cardiologist.

Last 4 months I had blood tests and my platelets count remains at 600s but RBC down a little, anyone experience that? Thank you in advance

Written by
swess profile image
swess
To view profiles and participate in discussions please or .
Read more about...
12 Replies
mol56 profile image
mol56

I have ET. JAK Neg Calr positive. diagnosed 12 years ago. I am 66

A few years ago, I experienced heart palpitations and my G.P. referred me to a heart specialist who gave me a heart monitor to wear for a week.

The results showed a left ventricular ectopic beat which is a fairly common condition and I was put onto medication to regulate the heart beat. The heart consultant assured me that it was not connected to my MPN. I have been fine ever since.

As for red cells, my counts vary a lot but the main concern is to keep my platelets under 500 and the other cells not to dip too much as I become a little anemic. It is all a matter of keeping a good balance and being monitored often.

Hope this is helpful. However, I must point out that this is how I am and we are all different in the way we deal with this blood disease and the treatment given to us. Tailor-made in fact!

Judith

swess profile image
swess in reply tomol56

Thanks Judith for sharing your experience. Yeah was told everyone is different. I am now referred to cardiologist to check. But overall my BP is normal and pulse rate is normal for now. Not sure what caused the palpitation. I suspected could it be due to PMS?

swess profile image
swess in reply tomol56

Hi Judith, just to check if you are on any medication for the calr +ve? Aspirin?

mol56 profile image
mol56 in reply toswess

I've been on Hydroxycarbamide for 11 years plus aspirin.

Bisoprolol for the ventricular ectopic beat and lansaprozole to counteract any excess acid. I also have a hiatus hernia.

I am lucky that I tolerate the medications fairly well so far. The aspirin I was put onto straight away and the hydroxycarbamide 6months into my diagnosis.

When I was first diagnosed, the research into the mutation of the Jak gene and the Calr gene was still in it's early stages so I had a BMB and blood tests to confirm the MPN.

swess profile image
swess in reply tomol56

Are you calr +ve mutation? I have not started any medication yet thou my count is 600+. As dr knows that I have risk of blooding thus has not started me with aspirin yet and I know I am sensitive to this medication as it is rather quite acidic...

I had my BMB last year and it was perfectly ok, not too bad accordingly to one of the snr doctor.

mol56 profile image
mol56 in reply toswess

I have E.T and am Jak negative but Cal r positive. At my last visit to the consultant I was told that I was doing very well in spite of having had this blood condition for 12+ years.

It is classified as a cancer as there has been a dna change in the bone marrow (gene Cal mutation). Only a slight chance that it will progress to MF. I do not worry about this at all.

swess profile image
swess in reply tomol56

Thanks for sharing the info. You have it with you for 12+ years? What is the count range? I had it almost 1+yr and initially was hard to accept but gradually learnt to accept. There is nothing I can do to change the fact. My count has been standing at 600+, the highest was 659 and reviewing with doctor every 3-4 months for the test, how about you?

So far does it affect your life? Or just as per normal?

mol56 profile image
mol56 in reply toswess

I did leave my job after a year.

I was a teaching assistant working with 10-11 year old children but found that I couldn't really do my job properly. I was in the fortunate position that I didn't have to work as we had paid off our mortgage and my 2 children had both left home. Although money was a bit tight my husband and I managed. I now get a government pension. Hard to say if my life was normal as my husband and I had elderly parents (in their late 80's and 90's )and all their problems to sort out. We lost all 4 of them in the space of 3 years. We now have 4 grandchildren and I find looking after them quite tiring.

Main thing to deal with for me is the fatigue. Not feeling tired and sleepy but having low energy levels. I do get slightly anaemic and then my medication is adjusted. My platelets are usually kept just under 500 and I am reviewed every 2-3 months.

I hope you can come to terms with living with a Mpn. It has taken me a while but I do still get the occasional wobble about it.

wishing you well

Judith

Kari1961 profile image
Kari1961

I have Supraventricular tachycardia. Diagnosed in 2009. I have no idea whether it's a symptom of PV.

As with you every time I went to see my GP about it, my heart rate was fine. I was then referred to a Cardiologist. Thankfully my faulty firing nodes played fair and caused a mega episode while wearing a 24 hr portable ECG monitor.

I've taken Verapamil for it since... and (touching wood) have not had an episode since.

swess profile image
swess in reply toKari1961

Thanks for sharing. Glad to hear everything is fine.. ;)

Hahag profile image
Hahag in reply toKari1961

Do you stil take verampil I'm on but doubt it stopped working so dr wants to take extra dose at night

Kari1961 profile image
Kari1961 in reply toHahag

I do Hahag

I take 120mg morning and night.

Karina

Not what you're looking for?

You may also like...

Dodgy heart valves

Hi guys, a change of subject from covid19. Has anyone else had issues with stiff (that’s how my gp...
Aime profile image

Heart

So who has heart flutters fast heart rate practicality doing nothing it wakes me up I had stress...
Hahag profile image

Heart racing

I was diagnosed with MPN this year at 26 years old. I have ET/Jak2+. I notice my heart starts...
Cathy426 profile image

Heart problems

Has anybody else experienced heart problems with an MPN?I have been having heart palpitations and...
JP1952 profile image

Aching heart

I have like an ache in my chest not pain but I am aware, I have an appointment with my local GP on...
Chez1947 profile image

Moderation team

Debinha profile image
DebinhaAdministrator
Mazcd profile image
MazcdPartner

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.