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.
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