Hello. I’ve been undergoing some cardiac tests over the past few months. In November I stopped taking propranolol after many years. I had taken it to prevent migraine but it stopped being effective. Within days after stopping, I began to feel my heart racing and fluttering and just beating really hard. I was advised this would settle in a week or so but it didn’t.
The GP arranged an ECG which was normal and then a 24 hour monitor which confirmed the raised heart rates. When she listened to my heart she asked if I knew I have a heart murmur - I did not.
Long story, short. Today I had a heart echocardiogram. It’s been reported that I have a severe mitral valve prolapse. The doctor said it’s the kind of damage they see after someone has a heart attack! Tomorrow I should see a cardiologist. In the meantime, I Googled it (like we do!) It is suggested this is often seen in SLE patients.
Does anyone here have any experience of this? Thank you.
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Justinealexx
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Hi I don’t have experience to help in your situation but I have Lupus and APS and I found out I have mitral valve thickening.
At this point they don’t seem concerned about it and have just said they will scan my heart every two years. I don’t have any symptoms that bother me with it currently.
Sort of..thank you for sharing. I've been experiencing this fluttering for the last 6 months which I've been "living" with; had 2 lots of 24 hour heart monitoring in January - all clear, blood pressure reading, pulse readings, chest x-ray all fine, so have been cleared by the GP. Over the last week it has got progressively worse especially at night. The fluttering has got much more noticeable in that it makes me cough. I've never coughed. I've felt that maybe I've become over anxious, stimulated by it, but now you've raised awareness that it can be found in SLE, I'm going to ask the GP again, although I did suggest that it could be linked to the Lupus, he felt it very unlikely. Thank you so much for bringing this to our attention. I am so pleased that you have an answer, so sorry that your answer is this, but also very grateful for suggesting it might not just be in my head. Keep well and look after you. A million thank yous - somewhat trite, but I have nothing else to send you except virtual hugs and lots of peace, love and light 🙏
Bless you. I was SLE diagnosed in 2017 after literally decades of unexplained symptoms. I completely understand how we convince ourselves (or allow ourselves to be convinced) that it’s all in our heads 😢 Even since then I’ve been consistently told my disease is mild with no ‘major organ involvement’. Hmmmm.
Anxiety will undoubtedly exacerbate many physical symptoms. And I do hope that’s ‘all’ that’s going on for you. My palpitations can be worse at night and I have a persistent dry cough. If you haven’t had one before, please pursue getting an echocardiogram, if only for some peace of mind and to rule out any valve issues.
OMG. Yes I've been told very recently that my SLE is mild and the Hydroxychloroquine prevents any organ damage, but you have definitely convinced me to push ahead even if just to rule out nothing. I've even been told recently by the pharmacist who refused my Covid Booster, that is "it" (SLE) even a "thing" even though it plainly says on my hospital letter SLE. Thank you so much, I really do appreciate the time you've taken to reply 🙏
That is shockingly unprofessional from a trained medic. All too often we are left to advocate for ourselves 😤
I suspect I’ve had this valve issue since before my diagnosis. Even as a child (I’m now 55) I struggled to breathe, heart pounding during excessive exercise (sprinting, cross country running, swimming etc.) I was always made to feel just unfit and to try harder!
Believe me, the support here means so much to me right now. I’m not telling my kids until I know more so thank you for listening 🙏
Yep I know that feeling, I'm 64. Nothing to tell until there's something. Well I'm happy to listen - it's great to find a kindred spirit (Anne of Green Gables) even though it would be better if it was a "Nothing Wrong With Me Forum!" Not sure there would be many contributors 🤔😉 xx
Just a quick response. I adore Ann of Green Gables and your reference made me smile. Appalling treatment by quite obviously a poor quality pharmacist. Have you managed to get one elsewhere?
Anne of Green Gables is what gets me through some days - everyday is a blank page just waiting to be written etc. I have a burning ambition to visit Prince Edward Island one day. In answer to your question, I didn't try another pharmacist as I generally think they are better qualified than me, and certainly to be told on several occasions that my Lupus is just "mild", further makes me feel that it must be "me" not coping very well with it, so I guess it's my bad. I am awaiting a call from my GP though so thanks to you all for raising my awareness and encouraging me that I am worth it and it needs to be checked. I am very grateful 🙏
I have had lupus for nearly 20 years. I have been on lots of different meds over the years. I am now on methotrexate and Rituximab. I was diagnosed with the same as you about 3 years ago. Firstly by my gp thinking something didn’t sound right. Mine is not considered severe and I just have yearly checks with the cardiologist . The only real symptom that I have is the occasional breathlessness when doing a bit of exercise.
Honestly, it never even came up. I see a cardiologist regularly and will ask. Thanks to your post, I learned the anti-cardiolipin antibodies are associated with MVP. Mine is very mild and I get echos for other issues. It isn’t really a big issue with me.
Since yours is severe, you may have to undergo more testing and take medication. I am pretty sure there is effective treatment.
You open up some interesting questions. I have had mitral valve prolapse for many years - no symptoms but doctors could hear murmur. I think I had it quite a ways before being diagnosed with UCTD. My mother had it,too, and hers was eventually replaced through surgery.
What seems different in your case is that your symptoms are new and it is only now that they can hear the murmur. I imagine the cardiologist will explain everything to you and the what the process is to know if it is your lupus that is causing it. Things are always more difficult when you have lupus, right?
Sadly, I am just starting my journey learning about cardiac involvement in SLE. I gather that it can be asymptomatic. I had some symptoms of pericarditis (off and on for several years but thought it was rib pain). Echocardiogram not only showed thickened pericardium but also a thickened left heart wall (left ventricular hypertrophy, I think). This is normally associated with high blood pressure (from which I do not suffer). I have googled it and low and behold it is also linked with SLE. I too have only been on HYD and told mild disease but things have changed and I am now going onto AZA or MM. Have they discussed your drugs going forward?
It's interesting that after the echocardiogram the Dr said it was really good to get a cardiac baseline for people with CTD. You'd think that they would be started routinely when we are first diagnosed- imagine the potential savings - our quality of life and on NHS money being used to treat more complex cases where thing have not been detected in good time. Dare we dream. Good luck with your next appointment. Let us know how it goes it you feel able. x
I didn’t mention but in actually in hospital at the moment with an unrelated infection. The cardiologist just visited me. He asked questions any whether I get any ankle swelling - no. And whether I faint - no. He said that’s a good sign that I’m not in heart failure. He asked about getting breathless, how far can I walk. I can and do walk but get out of breath easily.
He wants to talk to his consultant before deciding if I will be monitored as an outpatient or referred to a larger hospital for treatment (repair or replacement).
Thanks for all your replies. I’ll keep you posted. Here’s some articles I came across
Update: consultant has decided to order some further tests. A CT scan and an osophageal scan (tube down the throat to look at the valve in 3D) Could be 3 months before I’ll get appointments. He was careful to say I’m not in immediate danger but I’ll be reviewed in the valve clinic in 4-6 months
Sounds like your in the best place to get tested and an action plan started. I've read your other post re telling Rheumatology. I would phone the specialist nurse if you have one or email the consultant's secretary to tell them what is happening. It's really hard to know if we are born with some of these problems or if they develop because of Lupus. As the last cardiac Dr said to me, this could just be my heart, as they had no baseline!
I do so hope you get the support and treatment you need in a timely and as hassle free manner as possible and that the infection is put to bed as it were. Good luck in telling the family, difficult but in my experience people want to know so that they have the opportunity to support and show their love. xx
Thanks Rosie. That’s good advice and I will contact Rheumatology myself next week. You make a good point about the lack of baseline. It would be sensible to have a full body CT on first lupus diagnosis but I suspect the cost to the NHS is prohibitive.
My immediate family are being strong and supportive. I’m delaying telling my parents until after my osophageal echo, booked for 7th August. My mum is very ill and they just don’t need more stress.
To finish on a positive, I’m being sent home this evening after my final antibiotic infusion 🥳
Hope you're home and enjoying a relaxing lie in. I can fully understand not telling your parents yet. It is so very difficult, I know from experience, dealing with your own illness and supporting parents as best as possible. We can only do our best. I hope you manage to get support from the Rheumy team. Best wishes x
Bless you. Will you tell the children now? So glad you're getting treatment earlier, so much for SLE being mild. I guess it's only mild to people who haven't got it 🤔😉 Thank you again for your encouragement, I'm waiting to hear from the "nice" GP in my practice. He qualifies as "nice" because he actually listens to you and doesn't just shove you out of the door with the comment " "Bring it up with your Rheumatology Consultant!" which is fine but I only see him/her/they once a year. Anyhoo, just been referred to Cardiology so once again THANK YOU. Get well and get outta there unless they've chucked you out already. 🙏❤️😊
I’m waiting to speak to my husband, he’ll visit this evening. Then we’ll tell the ‘kids’ (27 and 24).
I asked the cardiologist if he would inform my rheumatologist. He said that wasn’t his job! But the team here on my ward might. Like you, I’m only seen once a year and apart from checking my pee and my weight, there isn’t much discussion. Am I deluded to be hoping for a wake up call??
You are very welcome! Very glad you have been spurred on. Hang in there and stay strong 💪
And you my lovely. I hope your stay is as short as it can possibly be and that husband and chidlers are preparing to peel grapes as we write. Here all evening if you're bored, cross, worried and everything in between. I have to have an ECG first, in 2 weeks and then I get referred, thanks to you, but the GP said if it gets worse, to call 999 and laughingly said might be better to go in the car 🫤.
My osophageal echo is booked for 7th August. I’m so glad you’ve reclaimed some control. So important to feel like we have some influence and are heard. I’m keeping everything crossed for you and I’m very happy to stay in touch if you’d like.
How lovely to hear from you and that you'll be home soon, so pleased for you. I hope you're feeling better and that your family are OK. I have been thinking about you. I feel better for having got in touch with the GP so will just jump through the hoops and remain hopeful. Of course, it would be lovely to stay in touch for each other if you'd like to too 😊 Enjoy your first night home 🙏❤️
Hi, although I do not have this particular heart issue, during a routine outpatient surgery while in recovery, I went into Complete Heart Block. Although I did not want it, and I had a written DNR, the cardiologist insisted on putting in a pacemaker/defibralator. I also have MTHFR mutation which inhibits my liver from properly methylation of B vitamins. As a result, homocysteine builds up in the blood stream which causes heart disease, blood clots & strokes. Although the cardiologist wanted me to go on blood thinners, I refused and went to a cardiologist who was also a naturist doctor who put me on a supplement called Homocysteine Supreme. The event occurred May 20,2020. That cardiologist has left the practice and the new cardiologist tells me I do not need a pacemaker/ defibrillator. He offered to turn it off but I decided for now to leave it. I have truly come believe that anyone with any autoimmune disease may also have MTHFR.
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