atrial fibrillation and ET

[eastwood1932]

during a pre op assessment at the hospital this week I had an ecg done and I was diagnosed with Atrial Fibrillation and told they would organise an echocardiogram to be done. I was diagnosed with ET in 2011 and am on Hydroxycarbamide. I was diagnosed after emergency treatment for a number of blood clots and have been on aspirin and warfarin since then. I was just wondering if AF is bigger concern because of the ET, I understand one of the biggest risks with AF is a clot forming and causing a stroke so am a little bit nervous since the diagnosis

Anyone experienced AF with ET?

Thanks

Janet

[quanglewangle]

Hello

I am not sure whether anything I have to say will be of any help but here is my two-penn'orth.

I am 81, have ET and AF (on my second pacemaker) plus a few other add-ons (Coeliac, pancreatic insufficiency) plus all the usual side effects of Hydroxycarbamide. Five years ago I had a TIA and have been on Apixaban & Omeprozole ever since (dosages of both recently doubled).

The good news is that life goes on (all right my breakfast and tea are prolonged by numerous pill and capsule ingestions), but thereafter dog walking, gardening and other projects keep me fit and happy - and my frequent health checks (haematology, cardiology, gastroenterology, etc) ensure that if anything goes awry it will be kept under control.

Quietly confident that I will be around for anther 20 years.....

Good Luck

[Hopetohelp in reply to quanglewangle]

What a wonderful positive attitude. Thank you for inspiring us

[Tipsy2023]

Hi Janet I also have AF recently diagnosed I have Et Jak2 positive but it took years to get a diagnosis and in that time had dizzy spells felt faint had palpitations which were getting more frequent .. but after ET diagnosis and medication it is hard to know cause of some of my symptoms.

Until a couple of months ago I had a 7 day tape which showed I was having Paroxysmal Atrial Fibrillation was commenced on beta blockers and blood thinners .. problem now is getting cooperation between.. doctors dealing with my Sjogrens ,ET respiratory ,rheumatologist gastroenterologist and now cardiologist ! ..

also neurologist who stuck with diagnosis of Migraines even after Et diagnosis and treatment and control of platelets stopped all migraines… so seems obvious to me ?

Until recently when haematologist said I must stop clopidogrel if I am on Riveroxiban for AF and my blurred vision returned and blue staines and stinging feeling in areas of skin on my legs .. my Gp restarted clopidigrel again and that has stopped .

I am not just complaining I appreciate in the NHS how difficult coordination can be but I suppose we have to attempt to bring it all together for our own sake and theirs . L

[Mufftreacs]

Hi Eastwood,

I had ET for several years and developed atrial fibrilation. I have now progressed to MF and still having my heart monitored on a regular basis. I take blood thinners, beta blockers and digoxin. I am now 83 and still going. My original diagnosis was in 2005. Try not to worry. It seems that many of us have AF.

[gset]

I too have had ET and now Myelofibrosis after 20 years and also developed Paroxysmal Atrial Fibrillation as a reaction to something in 2022, then being commenced on beta blockers and blood thinners. It is often difficult to tell symptoms apart, and I have had a fair number of reactions to different drugs over the years, however I use the MPN voice app to help me track symptoms. It can be downloaded from the App Store. You can also add a few custom symptoms that relate to you. I have found that it helps me see when things get worse or better and correlations -sometimes this may be because of other external factors like flu or cold etc. I also keep a copy of the side effects leaflets of each of my meds so I can check when something appears to flare and I contact my clinical nurse specialist (CNS) if I am worried. CNS are amazing people and can direct you as what to do next or who to see in the event . Furthermore if you use some form of tracking symptoms it’s very useful when you see any doctor or specialist, and allows you to quantify the impact of the condition and drugs on your life. Knowing all that I try to keep active and healthy in what I eat and drink etc. and I try to avoid stress as that keeps a lot of symptoms at bay. Anxiety about our conditions is real but it’s not good for us, so I try to live my best day every day knowing that some days are not as good as others, and I take advantage of the good days and deal with the fatigue and other symptoms when they happen. I also find a little diversion and keeping busy but not too busy helps me i.e. pacing, is a great way to focus away from our conditions. I hope this helps. All the best

[ainslie]

if AF then I thinks the risk of stroke is increased several times, and with MPN we are at higher risk cardiovascularly so the important think is to get the AF clearly diagnosed and treated asap, it’s usually pretty easily treated with beta blockers and or blood thinners. There is a very good forum on Healthunblocked for AF, there is also some good websites, one I think is called AFalliance, excellent info there.

I have tachycardia and PV, no AF so far, I asked my expert Haem if any connection between MPN and tachycardia, he said no.

[Dlaczego1948]

All I can say is that I am happy to be on warfarin. My daughter and her french husband are both medical doctors. Her husband, a french cardiologist said it's warfarin if you have ET, and Jak 2 which I have. I had blood clots on the lungs before diagnosis, now I am on hydr...... like you and warfarin. I know exactly how my blood is, a range between 2.-3. Good luck, to us both !

[eastwood1932]

thank you all for your replies, I actually have my regular Heamatology appointment on Tuesday so will talk it through with them then. Thanks again for everyone’s support

Janet

[JustKeepSw1mming]

Hi Janet, good luck with your appointment and hope your medical team can get this under control for you.

I have ET and now PV and I have issues with tachycardia from time to time. I had a cardiologist appointment, who said my heart was fine during the test.

I have a smart watch now that caught a few episods of the tachycardia now and AF.

I understand this could be due to Hydrea though, depending on how quickly it destroys the red blood cells.

It is interesting to see how many of us have noticed these hear rate issues.

I will also be talking to my hematologist about this next month. I am on Hydrea and aspirin at the moment . I don't know if this will change, now that I can show them my measurements.

Take care.

Mary