My wife was diagnosed with GCA in January 2017. She has very slowly reduced her prednisolone from 60mg to 1.5 but like so many others has suffered terrible fatigue. Last week she was more than just fatigued; having gone upstairs, she was breathless as well so we decide she should see the GP. Having reported the symptoms and explained that when feeling particularly fatigued her pulse was very eratic the GP found a perfectly normal pulse, BP and the heart sounded fine but he did advise a blood test and investing in a home ECG device (Kardia Mobile) which connects to a mobile phone.
The blood test has shown an increased level of ESR and CRP (both of which have been normal for a long time) and when the ECG device arrived various readings were analysed by the algorythm and marked as "possible atrial fibrillation". Others were fine. The traces (as pdf files) have been sent to the GP. (It also seems esr and crp can be raised in atrial fibrillation).
I understand there may be a link between taking high doses of pred and atrial fibrillation ... which can itself result in fatigue. Does anyone have any experience of this?
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Tonylynn
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I’m so sorry to hear that your wife now has the double whammy of GCA and AF.
I was diagnosed with AF three years after being diagnosed with PMR/GCA . After several unsuccessful 24hr Holter monitors trying to record unusual cardiac activity and being unable to catch an episode for my GP I invested in a Kardia Mobile and was able to get a perfect readout of AF which I printed and took to my GP who emailed it to the cardiologist. I am now on Anticoagulants, essential for those with AF and also Flecainide a drug to control my heart rhythm . I too become extremely fatigued during and after an episode.
A study showed taking corticosteroids, such as prednisone, increased the likelihood of developing new-onset atrial fibrillation (AF) – the most common type of irregular heartbeat. ... Taking daily doses of 7.5 milligrams (mg) or more of prednisone – whether oral, injected or inhaled – raised the risk to six times.
There is an extremely good HU group AF Association that can answer all your AF related questions.
Diagnosed Atrial Fibrlllation myself before taking Pred! I think no one really knows about the personal impact of GCA/PMR before it shows up!!
That is a huge unrealistic reduction programme for your wife in my experience.ATB
She has reduced very slowly over last year and no sign of any GCA symptoms but the eye hospital want her off pred as she also has macular degeneration!!!!! No fun getting older!
The autoimmune part of PMR/GCA can also be the cause of atrial fibrillation. I have PMR which is probably more like LVV (large vessel vasculitis) and which was almost certainly due to a/i damage to the electrical cells in the sinus node. It was definitely not due to pred at any dose - it started about 4 years before I ever got a dose of pred. Now it becomes worse when I have a flare and increasing the dose of pred I am on controls the a/f - which, in the absence of any other option from the cardiologist is what I do.
Higher doses of pred CAN lead to arrythmias developing but that then often improves as the dose reduces. It is something that increases in incidence with age and we are all of the age group where it is pretty common:
"There are an estimated 2.2 million people in the United States with AF, with a median age of about 75 years. The prevalence of AF is 2.3% in people older than 40 years and 5.9% in those older than 65 years. Approximately 70% of individuals with AF are between 65 and 85 years of age. The absolute number of men and women with AF is about equal. After age 75 years, about 60% of the people with AF are women."
It could be the GCA, it could be the pred - or it may have happened anyway. All that is important now is that it is treated properly - anticoagulant therapy is essential to reduce the risk of stroke.
After wearing a 24 hour monitor the cardiologist has diagnosed sick sinus syndrome. A pacemaker is due to be fitted next week. The esr and crp results were higher a week later than first readings but a week later they are falling. Hopefully fatigue is heart related and GCA remains dormant.
Hello, in view of the increasing inflammatory markers I would also want to look at it another way too, as in the possibility that the AF is being induced by increasing inflammation in the arteries. I don’t know what others on this forum think, but I think I’d want to ask for a PET scan to check the larger vessels.
re: 'fatigue' and "increased level of ESR and CRP (both of which have been normal for a long time)" These are indications she is probably having a flare and needs to increase the pred dose, Perhaps try 5 mg. I have had the same problem at times as I reduced from 80mg pred nov 2017 and now down to 6mg, and increasing the pred solved the fatigue problem. 5 mg pred is considered a very safe dose.
I also have arrhythmia but only a small amount of AF; 8 min in 10 days per 10-day holter monitor and my cardiologist prescribed BP drugs including a beta blocker. Also am on low dose aspirin [half a baby aspirin daily] which is the only blood thinner I can tolerate.
From 30 mg down to 1.5mg in two years is not slow. I finished my pred after 3 years and 7 months. I had paroxysmal AF before PMR, during PMR and for a year after. That has now become Permanent AF. I still get periods of extreme fatigue.
Many different experiences coming through Tonylynn. My own experience has been similar to your wife's - utter, debilitating fatigue, irregular pulse which sometimes caused breathing problems and near collapse. Few details follow.
Fit, active female, 70's. Jan 2015, developed flu-type virus (husband succumbed two days later). Feb 2015 husband recovering, me - getting worse, couldn't move limbs - became totally dependent on others. Couldn't open mouth to eat or drink, jaw stiff. Developed blinding, excruciating pain at back of head, pain killers useless. My GP surgery suggested increasing ibuprofen and making another appt when my own GP returned from holiday a few days later. (In retrospect I'm lucky not to have lost my sight.)
Emergency hospital admission March 2015, 3 weeks extensive tests culminating in temporal artery biopsy, GCA confirmed on top of previously suggested PMR which had been discounted because usual PMR steroid dose did not improve my symptoms. Hospital consultant prescribed immediate 500mg intravenous methylprednisolone to "zap" GCA and preserve my eyesight. This led to the start of my AF (but not diagnosed at that time) and further cardiac problems. Within the first half hour my heart started to race and palpitations were so powerful I was struggling to breathe and couldn't speak or move to alert anyone. (Continued high dose steroids, 60/50/40 and so on, slowly reducing until today at half a mg reducing to a quarter mg and blood tests normal) From that day onwards, I experienced the same symptoms and similar situations as your wife. Blood tests, monitors, ecg's - nothing showed up until a few months ago when I collapsed at home, and an ecg recorded AF. Anticoagulant and beta blocker prescribed but two weeks later, in the middle of the night, blue light ambulance, hospital, myocardial infarction. There is absolutely no doubt in my mind that these cardiac problems were a direct result of high dose steroids and I understand there is research which shows a connection between GCA and cardiac illness.
I've never posted these details on this forum because I haven't wanted to alarm any new members and my experience might not be shared by others but your description of your wife's problems has prompted me to outline the above in the hope that you will continue your proactive efforts to get to the root of her symptoms. Best wishes to you both and I do hope your wife soon recovers some of her vitality.
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Atrial fibrillation now as well!
? PMR flare without raised ESR or CRP 
Asking for ESR & CRP numbers
CRP / ESR - the % that ‘never raise’
Return of Giant Cell Arteritis 
