Hi, just wondering if anyone has any experience or information in relation to having long term tachycardia with GPA (or other forms of Vasculitis). Since all my other symptoms started about 4 years ago I have had a rest heart rate of between 100 and 110. The general view had been that it was caused by the Pred (and would reduce when tapered) but now the Pred has been at 5mg for the last 12 months they are now looking at other possible causes and are planning some further tests (ECG, blood tests, echo) to try and see if there is a specific underlying cause, as opposed to just being another symptom (albeit not a common one) of autoimmune disease.
Any related experiences or information would be really appreciated.
Thanks.
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John has WG ( GPA ) and was diagnosed with a heart problem last year. He went for all the tests ECG, ECHO, blood tests, was also monitored for 24 hours. I will ask him to respond PCAD.
I was diagnosed with LVV last November and I've experienced tachycardia for about 7 years. It turns out I've had vasculitis for at least 8 years.
I've had so many tests over the years including ecg's, echo's and a 24 hour heart recording to be told there's nothing really wrong. Just an 'abnormal' heart beat. My normal pulse is anything between 80-120. They gave me bisoprolol in 2009 and I've been on it ever since...
Unfortunately for me I have been left untreated for so long and now I developed problems with my heart (vasculitis treatment-wise).
Thanks for the reply and very useful information. Sorry that you have now developed problems. My increased rest heart rate (vurtually always between 100-110) started around the same time as the rest of my GPA symptoms so I really don't think it's a coincidence. My GP (who is superb) has a theory (but virtually impossible to prove) that the proteins being produced by the disease are impacting on the electrical signals in the heart (along the same lines as an infection increases your heart rate). As such, he is doing all the tests to try and rule out anything else.
Like Angharadj5, I have also been diagnosed with Large Vessel vasculitis, and I have also had tachycardia problems for a long time. Before my vasculitis diagnosis it was blamed on all sorts of things, including thyroid problems and I also had the full range of 24 hour monitors etc which showed nothing radically wrong. It did take a long time to get a vasculitis diagnosis though so I suspect that the tachycardia was mirroring the gradual silting up of my arteries.
Your GPs idea sounds very interesting as I do have something called Wolf Parkinson White syndrome, a tiny extra electrical pulse that shows up on an ECG. A cardiologist at Papworth said that I was 'very interesting' from his point of view and that he could correct the problem surgically, but it was probably better to manage it....so I've been on bisoprolol ever since. I'm just taken my pulse for you, and it is 57 after a strenuous bout of ironing. I hate ironing as it makes my shoulders and upper arms ache so much! A bit lower than usual as it's usually about 65, and big improvement on the 80+ that it used to be. If it does go high now it's usually a sign that I've got an infection, so that's worth looking out for.
Hi, I have episodes of supraventricular tachycardia which appear to have been brought on following a heart attack that was most likely due to my vasculitis. My heart normally runs at around 60bpm but will race up to about 120 nowadays when I get an episode. So similar, but I think not quite the same as yours.
I don't think that heart problems are that common with vasculitis but the disease certainly can affect the heart. So it's good to hear that your doctors are on the ball with the tests and investigations to get to the bottom of it. There are a number of different types of tachycardia so they'll most likely want to properly diagnose you before treating it.
As others have said, there's plenty that can be done to help with tachycardia once they've decided on exactly what's going on. Beta blockers like bisoprolol are a common one but there are plenty of others they might try. Bisoprolol can make you feel a bit lethargic so if you have problems with it it's useful to let to your consultant know. For me we adjusted the dose to get the balance right and reduce the side effects whilst still getting the benefit.
Finally I'd just like to reassure you that many types of tachycardia, whilst unpleasant, are not neccessarily life threatening. As with vasculitis, it's important to monitor and treat the problem appropriately. But I find that understanding my own condition and the treatment for it certainly helps reduce my anxiety when I have an episode.
Oh, just another thought. When you get your full diagnosis there is an arrhythmnia support group and associated charity here on HealthUnlocked that I've found very useful. Here's the link :
I developed paroxysmal Atrial Fibrillation when I first developed vasculitis. I was not diagnosed for 9 years (panic attacks, hysteria, see a psychiatrist etc., etc.). My vasculitis clinic at Addenbrookes sent me to a cardiologist and the arrhythmia clinic at Papworth and I take daily medication which controls it perfectly. For now I am in very good shape on Rituximab and heart medication.
I am also going through the process as my 24 hour tape shows that my heart is around 120 bpm. I have had echocardiogram and other tests which show the structure of my heart is fine. It seems we have this in common as sufferers of vasculitis.
It would seem it was thought John had tachycardia but after so many different tests was finally diagnosed with ectopic beats of the heart. He takes medication to rectify this problem. Which has been successful. Both John and his consultant think the GPA ( WG ) is the cause but it is difficult prove. John's age also has to be taken into consideration too.
There has been recent research carried out into cardiac involvement in Rheumatoid Arteritis and hopefully this research will extend to Vasculitis.
We already know there can be cardiac involvement with one of the ANCA associated types of vasculitis - Churg Strauss Syndrome ( EGPA ) in about 40% of patients.
According to the latest text book published 2015. (Systemic Vasculitis - Aman Shalma) discussing WG (GPA ) he says "All cardiac structures and conduction tissue can be involved with GPA ( WG ). Though clinically silent, pathologically involvement is more common and found in around one third of patients"
There is thought to be cardiac involvement in patients diagnosed with MPA ( Microscopic Polyangiitis ) too, but this has not been thoroughly assessed as yet, although in a recent French study there seems to have been around 10% with some kind of cardiac involvement.
So the answer really is , there should be more research for ANCA associated Vasculitis and cardiac involvement.
Thanks to everyone who has responded. It has been very interesting to hear people's stories. As Sue says, more research is required to find the link to cardiac involvement, but there does seem to be a link, not for everyone, but that's the same with most symptoms.
I will update this post if anything interesting comes from the various tests.
I was diagnosed with GPA last year and last month I have had 3 SVTs first one 200bpm and two at 186bpm but luckily I haven't had one since 10th May with a low of 56bpm. I have had these previously but they would only last 10 minutes.
I have been started on bisoprolol this week and my heartbeat is now down to 70 and o feel much better for it. I had the test results back and nothing could be found that was wrong in the structure and movement of my heart and so my rheumatologist and cardiologist agreed to start me on this bisoprolol and so far, so good. Please do keep us posted
Just as an addendum. I started to feel very shaky and had awful tinnitus after my first dose of bisoprolol and I felt like I was going to pass out or peg it. My GP has told me to stop the bisoprolol. I googled tinnitus & bisoprolol and bingo, a load of hits. It seems it's not the answer for me. Anyone else have this reaction please ?
Thanks Jools. Just out of interest, do you think (or has it been suggested by doctors) that any of your other symptoms are a result of the tachycardia or is it just a symptom in its own right but does not cause any of the other symptoms? So far my bloods and ecg are fine. Echo next week.
My rheumatologist has said that it *could be* associated and he is certainly being very thorough in getting me tested by every department. I have had cardiology, lung and inter connective tissue and neurology involved so far. The beta blocker,bisoprolol, really made me feel worse than the high heart rate. I felt like I was having some kind of breakdown and panic attack and the really loud ringing in my ears didn't stop for over 2 days after not taking anymore.
I am now going to London free hospital to be genetically tested for periodic fever syndrome & this will be my final test. If I am shown to be clear of this then I can start on cyclophosphamide and/or Rituximab although my latest blood tests show me now clear of ANCA so I am hoping this means remission though I am not sure ?
I have had only 2 times where I had the rigor and the last time was over 2 months ago. I hope this means the azathioprine and prednisolone are working.
The biggest problem for me is that I am diagnosed with inflammatory bowel disease, chronic back problem ( 2discs involved) and also I have to have testosterone replacement due to a pituitary gland problem ( empty sella syndrome)
When given the entire picture I would imagine I am a specialists nightmare to diagnose. I don't even say anything to my GP with other things as I feel I am a burden as it is. I do suffer depression due to all of this and that really doesn't help but I would defy anyone not to be depressed when the pain and suffering is unremitting and stops me from planning anything. I do sometimes feel that I've had enough but haven't yet acted on this. My life now is just going to hospitals and doctors and very little else. I now even worry that I am not looking after my cats properly.
It seems to me that once a person has had one auto immune disease, it seems they are more prone to others.
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