Heart Murmur

[PuttyPenguin]

Having been diagnosed November 2020 with GCA & PMR, I had a follow up appointment with my rheumatologist about six weeks later. The result of this appointment (as far as I was concerned) was that she’d order a bone density scan.

Three months later, I had phone appointment with another rheumatologist – last one had left – and I asked again about the scan. He told me that a scan hadn’t been requested but an echocardiogram had. What! In her notes she stated that she’d found I had a heart murmur. First I’d heard of it. I’d had two bunionectomies in the previous 18 months in a private hospital in London and by golly, if they thought I had a murmur I’m damn sure they would have ‘mentioned’ it. Also there was no mention of a murmur when I had been admitted to hospital for three days with GCA/PMR in November.

I had the echocardiogram and I was told, via the GP, that there was nothing wrong. That’s what I thought so I happily went on my way thinking that the rheumatologist had ticked the wrong box.

Just over 10 days ago, I had a really bad stomach virus which, after four days, left me so extremely dehydrated that I passed out and hit my head. In hospital the doctor asked me if I knew I had a heart murmur. Now I’m worried. I know GCA can get to the heart so I’m asking have other people, after a diagnosis with GCA, been told that they have a murmur and that it’s ok? My other question is: who do I see for a second opinion – a private rheumatologist or a private cardiologist?

Thanks for your time.

[PMRpro Ambassador]

Had the doctor in hospital heard the murmur himself or was he going by the existing notes? I have a few quite interesting things on my notes - that don't apply now! In a few cases - didn't ever apply, they were personal assumptions by a doctor. They happen - even if they shouldn't.

In what way do you mean "GCA can get to the heart"? There does seem to be an increased incidence of cardiovascular events in the year after diagnosis of GCA but a murmur isn't quite the same. If an echocardiograph didn't find evidence of incompetence in the valves it reduces the likelhood a lot. Do you have any symptoms as listed here:

mayoclinic.org/diseases-con...

My husband had a murmur, found at 17 in a medical for Uni. He was very popular amounts our med school friends so they could practise listening for it! He had heart failure due to other reasons though, not his murmur!

You might find this interesting.

ahajournals.org/doi/full/10...

[PuttyPenguin in reply to PMRpro]

Thank you for this feedback, Ms Ambassador, I feel a lot better! It's just that it's a strange coincidence. Yes, I guess it is an infarction that I'm concerned about. I did read somewhere - at the beginning of this journey - that the giant cells can get into the heart causing infarctions which is why I have a concern.

[PMRpro Ambassador in reply to PuttyPenguin]

I don't think I have ever seen that. Giant cells have been found in the aorta, they only occur in certain sorts of artery and I'm not sure the arteries supplying the heart have the elastic layer where they occur. It requires a biopsy to identify them - so only possible post mortem.

I wonder if you saw this:

rarediseases.org/rare-disea...

which is nothing to do with the GCA we have, is very rare and mainly occurs in younger adults.

[PuttyPenguin in reply to PMRpro]

I didn't see this particular article but I have seen something like it and I'm sure they linked the two GCAs together. But it is rather peculiar that the murmur was found six weeks after diagnosis. Many thanks for your time in answering

[piglette]

My father has had a heart murmur most of his adult life. He did tend to faint occasionally.

[PuttyPenguin in reply to piglette]

Thanks Piglette.

[Noosat]

I would think it best to go to cardiologist to get a definitive opinion. A heart murmur in itself may not be too bad, but could be a warning of other problems. This from someone who has had a double bypass 6 years ago and had an aortic valve replacement by TAVR process a year ago

[PuttyPenguin in reply to Noosat]

Many thanks for your suggestions, Noosat, hope you're feeling better now!

[Benos123]

Hi,

Being brief for a change and based on my own experiences with GCA, suspected RA, PMR, Atrial and Bigemminy Fibrillation oh and a Leaky Heart Valve or two, the CARDIOLOGIST wins hands down every time. (Save the rhuinatologist (deliberate typo) for something else).

[PuttyPenguin]

thanks Benos!