Heart Involvement

[kingsnorth]

Does anybody suffer with heart complications due to lupus I’m in the process of having tests ie heart scan and wondered if it is common with lupus

[Chanpreet_Walia LUPUS UK]

Hi Kingsnorth,

Lupus can affect the heart, we published a factsheet on lupus, the heart, and lungs which you may find helpful to read at lupusuk.org.uk/wp-content/u...

[kingsnorth in reply to Chanpreet_Walia]

Thank you x

[Spanielmadlady]

Yes ....I had a chest infection in 2014 which lead to pleurisy in both lungs and inflamed my heart putting me into heart failure for a year.lupus affects organs with connective tissue x

[PMRpro]

Depends what they are - but arrythmia can be linked to autoimmune disease damage to the electrical system that governs heart rate.

[Hidden]

Coincidentally I just had 3 post alerts from a sjogrens forum from younger looking people with this disease who have suffered from heart attacks in the past week. All were extensively tested but nothing obvious found so told it was their sjogrens must have caused it. There are a litany of replies from people confirming - one with lupus too. I have scleroderma so cardiovascular risk very high for me with this but had no idea that sjogrens and Lupus could also cause this problem until today.

[kingsnorth in reply to Hidden]

I also have sjogrens x

[Hidden in reply to kingsnorth]

Sorry about that. I do too and often wonder if the stuff being blamed on my systemic sclerosis is actually my Sjogren's.

[kingsnorth in reply to Hidden]

I think my heart problems are to do with my valves but obviously until l have my scan on Saturday I’m in the dark

[Hidden in reply to kingsnorth]

Such a worrying time for you. I have never had an echo despite being referred for one over a year ago. I did phone the cardiology department but they said it was 6-12 months wait even before the pandemic so obviously even longer now. However ECGs in A&E and during infusions were normal so I’m not too concerned for me. If I was symptomatic I would be though. The people who posted with sjogrens heart attacks all had them very suddenly though and were posting from hospital. Nothing found wrong with their valves just sudden cardiac arrest out of the blue. I guess heart problems are so common in the general population that it would otherwise be hard to attribute to a CTD.

Best of luck and try to keep your mind on other things like - The Crown or a gentle walk or something diverting? 😊

[Jumper99 in reply to Hidden]

I hope they were tested for antiphospholipid syndrome as this is a cause of heart attacks in younger people. It does occur alongside lupus and sjogrens. X

[Hidden in reply to Jumper99]

I hope so too.

[Sezvic]

I had pericarditis in 2014 and it was that time I was diagnosed with SLE.

[LalSD]

hello, yes unfortunately, lupus effects the heart and my daughter has quite few issues. Arrhythmia is one of them. She has heart rate of 200 at times and we can not predict the arrival of these, sadly, but she now wears a watch which helps us monitor her heart rate. I hope you recover quickly and all works out.. With love, L

[DJK99]

Hi there - I have aortic regurgitation - moderate at present. I'm 57. My brother has a pig valve since 15yrs ago - but his heart was much worse obviously - he's 60. I used to be bi-cuspid for years - but the most recent echocardiogram says "normal". They think moderate (66% LV ejection fraction) is "normal". Interesting. So back next year for another echo. Have you had one? I presume so. You don't say what exactly is wrong with your valve/s. I had Atrial Fibrillation too but then had ablation procedure which seems to have helped hugely. I don't know if they think it's linked to lupus stuff... but presume not. As ever, if it's not actually "inflammation" based I think they keep it separate. It's all too confusing. I do hope you are OK - and if I can help more do let me know. Best wishes, D

[kingsnorth in reply to DJK99]

Thanks for reply. In 2014 I was diagnosed with regurgitation but as it was mild l wasn’t offered follow up. I was offered beta blockers but l didn’t bother with them once l knew my regurgitation wasn’t too bad. Over the last year it has got more frequent and can sometimes hurt when it thuds l have had an ECG and on Saturday I’m having an ultrasound I’m thinking that now my valve has prolapsed as I’m getting pain at the top of my chest especially after l have been bending down or over doing things. To be honest I’m pretty worried especially with covid being about I’m concerned about going to hospital.

[DJK99 in reply to kingsnorth]

Oh yes - as Insomniacette, I have now been found to have supra ventricular and ectopic beats - although they didn't call it arrhythmia. I did feel my new cardiologist was all a bit normal, normal, normal about it all, including the moderate regurgitation... "normal". I've noticed a lot of this recently... So yes, I totally get being worried about what's going on in there.. My supra and ectopic or whatever beats happen throughout the day and night (although the heart really behaved itself unlike usual during the 48hr testing - weird) and I know I still have atrial fib moments most days... but it didn't do it at all they said and was also "in sinus" even when the bombs were going off in my chest and it started and stopped... I don't think it was in sinus as my pulse was stopping. I don't get it really. Anyway, this isn't helping you! . I think if there was something very serious going on you would be in A&E.. I do hope it's nothing too bad of course, but trying to comfort you somehow. My off beats are quite something... bit disconcerting if someone had never had it before! So if it's anything like that I totally get your concern. I was on beta blockers in the past -40- 60mg after many years of staying off them...but this was for the Atrial Fibrillation, not the regurgitation... so do ask about that when you go and see them.. or have a check on line. It's blood thinners for regurgitation plus arrhythmia's ie 75mg of aspirin or warfarin if very bad - my mum was on a huge concoction and it kept her going very well indeed until her 89th year. I do hope your tests are OK, please update us. And re the Covid, I take it the hospital has covid there - the two I went to last month didn't amazingly.. down South. Best to go and do all the safety things you can - lots of antibacterial, hand washing and of course you'll all be face masked up. Take care and hope for the best outcomes... x

[kingsnorth in reply to DJK99]

I’m in Canterbury but if l need surgery l will have to go to London and worry about taking the train. I also feel the regurgitation in my throat for some reason.

[DJK99 in reply to kingsnorth]

Ah well that sounds like atrial fibrillation or arrhythmias. My mum's neck used to pulse so I could see it. Maybe you could get hospital transport if you were on the shielding list previously and still now.... and maybe if your GP or the hospital confirm that's appropriate... if you have to they could offer a health taxi as I call them that is very covid-tastic (I've had them) - or ask a local volunteer to take you. Try not to worry - of course it's easier said than done. One step at a time. I do feel for you.

[Insomniacette]

Hi kingsnorth,

So the way they discovered my lupus and sjogren was because they found that I had both a supra ventricular arrhythmia and bradycardia. Basically one fast beat and one slow beat. This led to a barrage of blood tests followed by lots of imaging of my heart, ECGs and tests where they found I have slightly leaky regurgitating valves - I'm in my mid 30s (at the time of diagnosis I was early 30s). No one has been able to tell me definitively if it's connected to my lupus and sjogren but they were all discovered together.

I remember in the early days I was terrified and scared. I stopped running in the mornings/working out because feeling my heart pound scared me. I was genuinely worried and anxious.

I'm happy to say 5 years on I'm relaxed about it now. I am careful with my weight and I'm working out again.

I've found cardiology to be 100 times better than rheumatology in terms of patient care and close monitoring. They monitor really well there and should anything start not functioning as well as it could I feel confident they'll catch it early.

Having heart involvement while frightening can also be managed so you can live your best life. Try not to let the fear get the better of you if you can.

[VeeWat in reply to Insomniacette]

What did they do about svt?

[Insomniacette in reply to VeeWat]

They monitor it. In the US and in non-UK Europe, once a year I would have an ECG, an ultrasound, a stress test and an appointment with a cardiologist to check for any changes from the previous year and to discuss. I have a pause of 2 seconds but it isn't causing me issues, so they just wanted to keep an eye on it. In the UK I pointed this out to my GP and asked what should happen here. She referred me for an ECG and an ultrasound. Both came back saying no serous problems and that's it. So basically I'm pushing to get the checks done but there's no one overseeing them or checking for year on year changes...

[Jumper99]

I have microvascular angina previously known as cardiac syndrome x. I’ve heard of it in people with antiphospholipid syndrome but I don’t know enough about lupus to know if it’s also a lupus problem. X

[medway58]

I was diagnosed with Lupus in my late 20s , I am now 62 and in the last 5 years have had heart problems related to the Lupus.

The symptoms are very similar to real heart disease, so you need to have the same tests that you would have normally to rule out ' the real thing'.

So its best not to assume that it is a Lupus flare.

[kingsnorth]

I have lupus for over 18 years but have had autoimmune problems since childhood starting with constant swollen glands. 2014 l was diagnosed with leaky valve so I’m assuming this has now deteriorated. Like you l never assume anything is a flare but it is draining.

[Chicapee]

I was hospitalized twice due to bradycardia heart rate 32 bpm and pericarditis, I was sent to the cath lab the 2nd time. The electrophysiologist that I was referred to for a pacemaker, referred me to a rheumatologist who diagnosed me with SLE IN 2013.

[daniel55]

Hi Kingsnorth

I suffer from a heart murmur which is 2 slightly leaky heart valves and I have to have an echo I think it is every 3 years. My heart function is normal but apparently but is functioning on the lower end of normal. I had my first echo when at a hospital appt. I was worried about my swollen legs and ankles the Dr said it was just the hot weather but to humour me said he would get a scan done and the result was the slight problem as it is at the moment I have no swelling at the moment and I don't have any symptoms. Good luck xx

[kingsnorth in reply to daniel55]

Hi Daniel thanks for your reply you were certainly on the ball did you feel your murmur. I don’t have swollen ankles l must admit l do keep checking! I hope you continue with good health

[daniel55 in reply to kingsnorth]

Hi Kingsnorth no I didn't feel my heart murmur and still don't ;xx

[DJK99]

Hello - Just wondered how you are and if you had any outcomes from your tests? Was rather worried about you. D

[kingsnorth in reply to DJK99]

That’s kind of you to ask. I had my heart scan nearly 2 weeks ago and haven’t heard anything yet lm assuming l will get a call from a cardiologist rather than my gp who sanctioned the tests.

[DJK99 in reply to kingsnorth]

That’s difficult having to wait I know. Well, they “will let you go home” as one of my previous echo techs joked after doing the test - so I do hope you’ll get news soon that eases your mind as much as possible and gets a plan in place to try and sort it all out. Do let us know, that’s if you want to. Take care, D

[kingsnorth in reply to DJK99]

Thanks l will let you know as soon as l hear its worrying anyway but the thought of having to go into hospital with covid about is even more scary.