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
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
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?
Hi Judith, just to check if you are on any medication for the calr +ve? Aspirin?
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.
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.
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.
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?
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
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.
Aching heart
Besremi and the heart
PV and heart problems
Heart palpitations 
It breaks my heart
