GPA heart disease

[ludo]

Anyone with GPA had heart involvement?

[ludo]

Sorry I thought my first post hadnt sent.

[michichgo in reply to ludo]

Hi Ludo.

Sorry to read about the pain you're experiencing. I was diagnosed with MPA (another ANCA vasculitis) 6.5 years ago, and in that time, I've struggled with numerous health issues.

In 2015, I was undergoing my second of 2 hip replacements, when doctors detected a rapid, resting heart rate. I was ultimately diagnosed with tachycardia, which is defined as having a resting heart rate in excess of 100 beats per minute. Medication (namely, Bystolic) reduces my heart rate but mild exertion gets my heart racing in under five minutes. Below is a link describing the condition.

The cause of my tachycardia remains unknown. Doctors kind of shrug and say "MAYBE vasculitis?" related. A typical response for we vasci patients.

Since that time, I've experienced the symptoms you describe, which are signs of cardiac issues. My pain and discomfort comes and goes but, when present, can linger for months.

I see my cardiologist every 4-6 months and have annual tests performed, including echocardiogram, stress test with ultrasound, and carotid artery ultrasound. So far, nothing's been detected. Honestly, it's a bit disconcerting, as is everything else that's occurred since my vasculitis diagnosis. I think vasculitis causes a lot more damage than is currently been proven or known.

health.harvard.edu/a_to_z/t...

Wishing you improved health and decreased pain.

Michele

[ludo in reply to michichgo]

Many thanks for your reply Michele.

It is really difficult to know what is vasculitis related isn't it.

I had informed my GP of my symptoms and was waiting a cardiology appointment locally which was 3 months away. The symptoms come and go and I have to confess I've had them approx 2 years.

I can go several weeks between attacks and it's not usually on exertion., I don't get breathless etc. I do get palpitations but these were investigated some years ago and found to be nothing of concern. So I'm not convinced it's cardiac.

Anyway, whilst at a routine vasculitis appointment recently one of the questions the consultant asked was if I got chest pain. That's when I told him and he initiated the tests. With strict instructions to call an ambulance if /when it happens again.

I've had one episode of tachycardia with a heart rate of 120 so not too drastic. It last sound 30 minutes and I was on the verge of going to hospital when thankfully it stopped. That was back in October, so thank you for the website I shall read it with interest.

I do hope they get to the bottom of your symptoms too. It is disconcerting.

Best wishes

I

[michichgo in reply to ludo]

Thanks, Ludo. Here's to healthy hearts in 2020.

[Tbrz]

Hi, do you mind if I ask what kind of heart involvement do you mean.

[ludo in reply to Tbrz]

I've been having occasional central chest pain radiating to my back and into my jaw. Having a heart scan looking at small blood vessels. Just wondered if anyone else had this.

My consultant just airing on the side of caution. Given the complexities of GPA.

[abc1]

Hi Ludo,

Yes, I had damage to both mitral and aortic valves replaced with tissue valves 10 years ago now. One of the removed valves had a growth on it determined to be as a result of GPA I had had since I was 26. Discovered growth via ultrasound scan of heart. Initial symptoms were angina like chest pains but only on exertion but got worse over next 2 years causing breathlessness on walking even just up the road to pub. Am fine now, have been on MTX for over 20 years. Have a pacemaker as a result of the surgery but recurrences of growth and no long lasting damage to rest of heart or function.

[ludo]

Thank you for your reply abc1. Interesting to read about your heart growth being related to GPA. Good to hear there's been no reoccurrence since treatment.

I was on Mychophenolate after cyclophosphamide which suited me well and by all accounts I went into remission. After 13years my treatment stopped that was 2 years ago. I'm still on 5mg prednisolone and will need to stay on for life due to adrenal gland insufficiency. A small price to pay for life saving treatment.

My heart scan is on Monday so it will be interesting to see if it's GPA related. Hopefully not.

I wish you well.

Best wishes Ludo