Ive recently been diagnosed with atrial tachycardia following an EPS so waiting for an ablation. I also have ANCA associated vasculitis which was diagnosed nearly a year ago.. still trying to find the right meds to control my horrible symptoms. Up until 3 years ago I was a fit and healthy 43 year old.
My question is does anyone on here also have heart issues on top of their vasculitis? I’m convinced there is a link looking at my time line but unable to find anything specific on line.
I’m seeing my Rheumy consultant next Friday but would like to know what you guys think too.
Many thanks Mish
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Mish-da
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I have atrial fibrillation - which the specialist arrythmia cardiologist here is confident was caused by the autoimmune part of the vasculitis I have (polymyalgia rheumatica/giant cell arteritis) and which definitely gets worse if the vasculitis flares. The symptoms started, albeit unrecognised, about the same time as the PMR symptoms. For some time (until a pacemaker was fitted) I was using a higher dose of pred (only option for PMR) to manage the cardiac problem as well.
They don't like to use ablation here as they say it rarely works for long and there are risks so keep it until there is no other option. I've recently had a pacemaker fitted so they can use more medication for the a/f without the bradycardias causing trouble (I have had up to 7 second asystoles recorded!). In fact, I've been fine on LESS medication since for some reason! I still get the a/f at times, mostly if tired I suspect, but a dose of magnesium pidolate as used in our hospital seems to calm it down very quickly.
Thanks for your quick response! That’s very interesting yes my heart problems started around the same time as other symptoms which I later found out was the vasculitis. But ignored it until one day when I was at the hospital for Rheumy appt I passed out pulse was nearly 200 for around 30 minutes. Urgent referral to cardiologist done then. So yes it certainly seems there’s a link then.
Glad things have improved for you.. fingers crossed ablation works for me and I get some different meds for the AAV that actually work!!
I have MPA and developed AF at the same time. Neither was diagnosed for several years. I am now very well treated in a specialist vasculitis clinic but the cardiologists did not confirm and the association has still not been confirmed. Eventually, last year, I went privately to an arrhythmia specialist where the AF and bradycardia were confirmed. I too have a pacemaker. The ablation (nothing to be afraid of there!) was not successful as the AF had deteriorated and become chronic and I eventually had an AV node ablation. This means that I am now pacemaker dependent but the modern pacemakers are very sophisticated and I suspect rather more dependable than my own heart. This has given me a much improved quality of life. Good luck and I can only say the intervention has been very helpful to me.
Thank you! Good to hear your now treated by a specialist. Not really looking forward to the ablation only for the fact of being awake!! The EPS I had last month was a weird experience... someone taking control of my heart whilst I was awake albeit slightly sedated will stick with me for some time!!
Hi Mish-da,
Cardiac problems are fairly common with auto immune/ Rheumatic conditions unfortunately as in very simple terms the heart doesn’t like inflammation.
Both the large and small blood vessels in my heart have been affected, I have a thoracic aortic aneurysm and microvascular angina as well as bouts of pericarditis.
The problem is that Rheumatologists in the main don’t know much about cardiac issues and cardiologists don’t understand Rheumatology, it’s worse when you have something rare.
Going to give my standard reply now, until you see a Consultant who really understands and has experience in treating Vasculitis then I suspect you won’t get effective treatment and a proper explanation. Most of the large, multi disciplinary vasculitis clinics liaise with cardiology and have expertise.
Thanks for your reply. Sorry to hear of your heart issues... I do hope treatment is effective for you and you can lead a relatively normal life. Nobody tells us what other problems can develop with this disorder.
I’m looking at requesting a transfer over to Addenbrookes who have a specialist centre. My cardiologist has also suggested this who is at Papworth hospital.. same site. Nearly a year now since diagnosis and feel I have got no where.
I would definitely get seen at Addenbrookes by Prof Jayne vasculitis clinic. You can get your GP to refer you. Cardiac problems can be caused by many types of vasculitis. Sometimes cardiac problems resolve when the vasculitis is brought into remission.
Thanks Amy yes from reading everyone’s posts I will definitely get my current rheumatologist at my local hospital to refer me when I see him next week. I get the impression he isn’t that knowledgeable on the disease or the nurses more around the arthritis area.
Hi Mish, like others on here I too was a fit and healthy person only 4yrs ago when I was struck with GCA. I already had an aortic anyeurism on my ascending aorta immediately above my heart, and the GCA weakened the tube so much it was advancing in size at a rate that would have finished me off had I not had an operation (aortic arch replacement) last year. Fortunately my heart is ok with only a little calcification in one or two minor arteries, but I have been through AF, raised and lowered BP, water retention, and a TIA. All very exhausting when they happen but things have been calm now for around a year since the op.
So I think you are right when you say there's a link between these conditions, but only very close and regular monitoring and measuring can reveal when something gets too bad and medical intervention is required. They do bloods, CT scans, and Pet scans, and dexa scans.
I do have another anyeurism on the thoracic/abdominal part of my aorta which will eventually require a stent. They may refer me to St Barts for that I'm advised, but I have been under the cardiac and vascular doctors at Glenfield - a leading center for this stuff in the UK. My rheumy is at Leicester Royal and I'd recommend the doctors there as all depts concerned communicate regularly with each other about a patient's advancing conditions (Rheumy, cardiac, and vascular). Hope that helps and all the best to you.
Hi Mish-da. That’s interesting. I have non anca peripheral Vasculitis. I was fine heart-wise until I took Cyclophosphamide which is apparently known to have that side effect. I got Atrial Fibrillation. This became less when I went off the Cyclophosphamide but did persist infrequently. I was put on Rituximab. This went on with infrequent AF until I had a shoulder replacement. I then had frequent AF lasting around 3 months, had a Reveal monitor which spotted that my heart is stopping, particularly at night time. So now I have a pacemaker. It may be that I was always going to get AF as I had for years a murmur that was posture related. So there is not a definitive link with Vasculitis. There was another thread on Cancer and Vasculitis. I did have breast cancer some years after the Vasculitis, so there may be a link there, but it is not a clear, scientific one. I could imagine that, if one part of the body is not functioning properly, the rest is under some strain.
I was diagnosed with EGPA 2 years ago and my heart was badly affected as well as liver spleen left eye and nerves in right foot and right hand ( I couldn’t hold a pencil). I had AF and VT when in hospital and had a defibrillator fitted. All medicines have done their job and I am back playing tennis 3 or 4 times a week. The heart is a remarkable organ and I don’t give my defibrillator a second thought now. Hopefully things work out as well for you as they have for me
I have severe chest pain , dr thinks its vasculitis of carotid , but no evidence till now , but pain is very bad in dehydration , anyone same? How to confirm carotid vasculitis?
Mass General Hospital info sheet for PET-CT says "If you are over 60 or have kidney disease, diabetes, lupus, or multiple myeloma, you’ll need a blood test beforehand to make sure the contrast will be safe for you."
Studies have been done to see if they need to adjust the uptake time for patients with renal failure - which suggests that for most people there isn't a problem. But you would have to ask your local specialists.
Do you have tachycardia or atrial fibrillation? I think they are two different conditions. Every response on here concerned atrial fibrillation.
If it’s tachycardia, what is the cause? I had tachycardia caused by a very common congenital defect - an extra pathway in my heart. I had ablation - the doctor cauterized the extra pathway - & I’ve never had tachycardia again. That was 9 years ago. My ANCA associated vasculitis didn’t manifest until 5 years ago, the tachycardia began 11 years ago. I don’t know for sure, but doubt they’re related. Atrial fibrillation, on the other hand, may very likely be related to the medications, especially steroids, used to combat autoimmune diseases.
Tachycardia is a fast heart rate. When I have an a/f episode, my heart rate can be up to over 200 though 160-170 is more usual. That is tachycardia - which in my case is followed by a period of bradycardia which was resulting in asystoles of up to 7 seconds.
My a/f is not steroid-induced, higher steroids reduce the problem, mine is vasculitis induced and the a/f gets worse in a flare.
None of it is simple, you can have different underlying causes and different manifestations.
Interesting you should say that as I’ve certainly noticed my tachycardia/ palpitations worse during flare ups.. everything happened around the same time it’s only now I’m questioning whether vasculitis is responsible. From reading your post and others this may well be the case!
Hi it’s definitely not the meds as the heart issues started before diagnosis and therefore treatment I just chose to ignore the erratic heart rates due to all other symptoms going on.
Following the EPS my cardiologist said atrial tachycardia. Heart can race then skip beats out of the blue during which time if feel lightheaded, sweaty etc. My echocardiogram prior to the EPS was normal not sure of the cause other than thinking it’s related to the vasculitis
Yes - so it is very different from the tachycardia I experienced. That’s why I asked the cause. It does sound like it might have an association with the vasculitis. Also, how does your vasculitis affect you? Mine was in my kidneys, but yours may be in your heart??
I’m still at the early stages only having seen the consultant twice. Mainly sinuses, swollen side of face, strep throat,constant infections, malaise and general flu like symptoms. Last urine test showed moderate amount of blood, and I’ve started to cough a lot will hopefully get more of an idea next week when is we him. So far had steroids methotrexate ( which didn’t work for me due to side effects). been on Mycophenolate for past 4 months.., again not effective 😢
Hi I have GPA Vasculitis and have extreme nerve issues in the feet, legs and hands. Found out I had this 2.5 years ago at the age of 49 and like you fit and healthy at that point. 2 years down the line and they find out I have heart failure with left ventricle dysfunction and either the chemo or Vasculitis has caused this. Now on more tablets for the heart.
I was diagnosed with GPA 5 years ago. I’d had a cough for 18 months and AF started ~12 months after.
It took 3 ablations to stop the AF. With hindsight the last one was probably unnecessary as AF had become much less and my PR3 ANCA test results went to zero not long after the 3rd one.
So my message is, if it looks like your ANCA results are coming down persist with the anti-arrhythmic drugs a bit longer.
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