Heart problems

[kingsnorth]

I’m just wondering whether anybody has had heart problems which could be caused by lupus I regurgitation which is becoming worse

[PMRpro]

What do you mean by regurgitation?

[kingsnorth in reply to PMRpro]

Ectopic heart beats

[PMRpro in reply to kingsnorth]

They are normal and very common - often idiopathic (cause unkown) although some food stuffs can make them more obvious. And once you notice them, you often become more aware of them happening so a downward spiral!

If you are having episodes of palpitations you need to speak to the GP and see if they will do a heart monitor to see if there is anything more afoot. I have atrial fibrillation which is considered to have been caused by the underlying autoimmune condition I have (not lupus) having damaged the electrical cells in the heart that govern heart rate - because it originally started about the same time though not as bad as it is now. But that happens in people without a/i disorders too.

[kingsnorth in reply to PMRpro]

Thank you for your reply. l will speak to gp. I have just had 24 hour bp monitor which was normal. I am getting palpations as well. I hope the gp can sort out the monitor at this stage rather than referring me on to cardiologist.

[PMRpro in reply to kingsnorth]

If a 24-hour monitor doesn't show anything of concern - and it won't if it doesn't happen while you are wearing it - then you may need a multi-day one but I suspect they come via the cardio dept. But things that may worry us are often not of concern to the doctors - so do explain and ask.

[Spanielmadlady]

Hi.lupus is known to affect the lungs,heart,kidney and brain.... organs with connective tissue.in 2014 I had a chest infection which led to pleurisy which inflamed my heart and put me into heart failure for a year.i have lung and kidney involvement as well x

[VeeWat in reply to Spanielmadlady]

What did you take for HF and is is ok now?

[Spanielmadlady in reply to VeeWat]

Hi I was put on to blood pressure medication clonidine ( now moxonidine as clonidine is out of manufacture) and everything is ok now.i have been left with minor regurgitation on my mitral and tricuspid valves but it doesn't require treatment. I have a heart echo check x

[DJK99]

Hi Kingsnorth - by regurgitation do you mean "aortic valve regurgitation — or aortic regurgitation — is a condition that occurs when your heart's aortic valve doesn't close tightly. Aortic valve regurgitation allows some of the blood that was pumped out of your heart's main pumping chamber (left ventricle) to leak back into it" - yes? This is what I have and had my yearly echocardiogram for it last week. Or is it your mitral valve? I have moderate regurgitation - has yours been defined via echocardiogram yet?

I also have paroxysmal atrial fibrillation which is the heart condition that causes an irregular and often abnormally fast heart rate. I had a 48hr monitor on last weekend but just to check it's ok at night as my AF is quite good compared these days as I had a procedure called "ablation" about 4 or 5yrs ago where they go up your leg blood vessels and into your heart to "freeze away" the bits of heart that are making it fire off incorrectly (or something! ;). Anyway, that worked quite well after about 6mths... I think it took so long to settle due to my extremely stressful job and or course, the lupus effect leading me to be exhausted and ill generally. It's very common to have AF - but it's severity needs to be identified. Do you hold your wrist and feel it going on and off? Can be quite weird as sometimes in the past I had no pulse for a few seconds ;)! So it was felt I had bicuspid aortic valve but the last two echo's said I was definitely tricuspid (as it should be). My brother was bi-cuspid and had a pig valve aortic replacement about 20yrs ago. That has really done him well (although sadly he's now in a nursing home with Parkinson's at only 60).

They think I might have been born with all this, as my family also have it (does yours?) - but I don't remember the AF coming on until I was in my teens (but then again thought everyone had it... as my family weren't allowed to talk about health as my strict father was a Christian Scientist ie ill health doesn't exist ;)! Er............ difficult. So - I don't know if the lupus (which my rheumy thinks I was born with and the malar rash on my face and all vile symptoms from being a baby) made my heart this way or it was congenital. All I know is, to answer your question, is that the regurgitation is the same this year as last year and so it isn't deteroirating - not to say that it won't apparently. My brother's was much worse - he's only 3yrs older than me. The AF definitely got worse hence I had the ablation - after ambulance/a&e stuff etc.

So... Are you on aspirin? And beta blockers? I was on both for years but not required currently as much more stable (although will see what new cardiologist thinks after they check my latest results). Do you have a very good diet? And exercise as much as is useful? Very important. You can join the British Heart Foundation (er, think that's what it's called) and get a monthly magazine - but best not if you find you get upset reading lots about it. What has your cardiologist said? How often do you see them?

Hope this helps - always happy to discuss if you want to on the "chat" bit.

D x

[kingsnorth in reply to DJK99]

Wow very knowledgeable thank you. To be honest I’m not sure which valve it is as it was so long ago. I saw a cardiologist l had an echocardiogram which scanned my heart, at the time l was told that the valve wasn’t closing properly and blood was slightly leaking l was told it was fairly common l was offered medication (l think beta blockers) but cardiologist said if l didn’t want them it didn’t matter, as it wasn’t life threatening l didn’t bother being prescribed them. I wasn’t offered any follow up appointments.

[DJK99 in reply to kingsnorth]

Ah OK, that sounds unusual as it should be monitored - so how do you know your regurgitation is getting worse? Do you feel it is getting worse? I'd definitely ask your GP or rheumatologist to get you referred for a check up - it's v important.

[kingsnorth in reply to DJK99]

The jumping is happening more often and sometimes when it happens it actually hurts it’s high up in my chest. I don’t get chest pain only when the jump happens. I don’t get breathless

[DJK99 in reply to kingsnorth]

Hmmm sounds like atrial fibrillation - not your regurgitation - but this really needs to be rechecked pronto. Please definitely see your GP asap to get yourself referred to cardiology. This isn't something to wait around for... OK? Will you call your GP now for urgent phone discussion or visit? Sorry - I'm being a bit pushy xx

[DJK99 in reply to kingsnorth]

Oops - sorry just noticed the advice above. As PMRPro said, you need a monitor for more than 24hrs I think - as it might not do anything in a 24hr period although that's a good thing that it didn't of course. Although you did say it was for blood pressure I know they can also check for AF - was yours like that? I've had a week long heart monitor, pre ablation, and it really showed up what was going on. My recent 48hr one didn't enough I don't think - as soon as I took it off my heart was misbehaving for the rest of the week! Anyway - you do need a Cardiologist specialist on this I'd say. I do hope you get the specialist support you need, especially going into the flu (and now Covid) season, as you need to be on the right drugs and put forward for a thorough check up to highlight any issues that need remedying/monitoring further. All the best to you x

[kingsnorth in reply to DJK99]

Think mine was just bp as far as I’m aware. I will contact my gp and have a word. Thanks for your advice

[PMRpro in reply to kingsnorth]

There are two different sorts of Holter 24 hour monitor - one has a BP cuff that inflates every 30 minutes during the day, hourly at night. It measures BP and only bP. The other has ECG leads on your chest and just records an ECG continuously for 24 hours.