It's not the adrenals it’s AF!: I kept thinking it... - PMRGCAuk

PMRGCAuk

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It's not the adrenals it’s AF!

Karenjaninaz profile image
17 Replies

I kept thinking it was because of my tapering: I was short of breath, felt “chesty” and dizzy.

The monitor I wore showed <1% incidence of AF but still at risk for stroke- so Eliquis for me. Scheduled for a visit to the electrophysiology lab for assessment. I believe it’s getting more frequent. Stopped my taper at 7 3/4 mgm. Don’t think increased pred will correct this.

Can anyone relate?

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Karenjaninaz profile image
Karenjaninaz
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PMRpro profile image
PMRproAmbassador

I've had a/f for the entire time I've had PMR - brief episodes started about the same time and the electrophysiologist here is confident the autoimmune part of PMR damaged the electrical cells in the heart forming the sinus node. A study has established the rate of a/f is higher in patients with PMR and RA even though our age group commonly has a/f.

I find it is worse if I am flaring - so a bit more pred does help for me. The bivalent Covid booster woke it up good and proper with episodes of up to 12 hours at a time but the electrophysiologist wasn't interested - he said the propafenone had stopped working after 10 years, only supposed to work for 5 or 6 years. A change to Flecainide is working a treat while I wait for an ablation.

Karenjaninaz profile image
Karenjaninaz in reply toPMRpro

That’s interesting about higher incidence with PMR; we are also in that age group when non PMR folks get it too . Sounds like a double whammy.

PMRpro profile image
PMRproAmbassador in reply toKarenjaninaz

Yes, I had asked Sarah Mackie if there was a link but her reply was the age group means both are more common - which of course wasn't what I asked! Then a paper was published relatively recently

pubmed.ncbi.nlm.nih.gov/340...

Karendeena profile image
Karendeena in reply toPMRpro

That's very interesting, my PMR started almost the same time as my afib. I also see a few of us on this site have both. The covid booster sent my af rocketing too. I am too scared to have another

PMRpro profile image
PMRproAmbassador in reply toKarendeena

Jury's out!!!!

Purple-Owl profile image
Purple-Owl

What is AF?

PMRpro profile image
PMRproAmbassador in reply toPurple-Owl

Atrial Fibrillation

Karenjaninaz profile image
Karenjaninaz

Retired nurse anesthetist here. Thankfully my coronary calcium score is zero. In the past I noticed pacs with long term H2 acid blockers and H1 for allergy. This myocardial irritability seemed to surface when tapering to 7 3/4. But I have restrictive lung disease from, corrected scoliosis residual deformity and asthma. These probably did a job in my R atrium.

On O2 24/7 too.

Broseley profile image
Broseley

I would recommend Eliquis. You don't need any INR tests at all. In fact I'm about to start on a new drug, Edoxaban, which is even better, I'm told, as you only take it once a day (Eliquis or Abixaban is twice) and the pharmacist says if you miss a dose you can take it as soon as you remember with no risks of stroke unlike if you miss a dose of apixaban.My mum was on warfarin for the second half of her life (she lived to 93). When she moved near to me I had to take her for fortnightly INR tests which meant taking time off work. Also her warfarin dose kept being adjusted which was difficult for her to manage. I requested she was changed to apixaban. No more blood tests, just twice a day medication and her life and mine was so much easier.

PMRpro profile image
PMRproAmbassador in reply toBroseley

On the other hand - it nearly killed my husband because it is never checked, He was taking another heart drug that interacts with apixaban when taken at similar times, reducing elimination, and by the time it was realised the blood level was 10 times what it should have been, It was a close thing with no antidote at the time,

Broseley profile image
Broseley in reply toPMRpro

Oh boy! Thats dreadful. Was it not mentioned in the PIL?

PMRpro profile image
PMRproAmbassador in reply toBroseley

It is - but when the haematologist head of the hospital lab checked it all out and notified the physicians who use them, they just said "ah, so ..." , One of the first things Peter had done when the NOACs were introduced was get the assay kits and told the surgeons he could test, The surgeons were VERY aware of the problems, knowing that most patients who had been told to stop the medication 2 days before surgery, which is what it is meant to be, actually needed at least 4 days before the bleeding was acceptable for surgery. I was also on Pradaxa and an antiarrythmic that shouldn't be taken at the same time or the blood level rises. I had chosen it as it was 2x daily which helps and there was already an antidote! Warfarin is relatively easy - pump in vitamin K. They did that with OH - pointless as long as the NOAC was working on its particular point. They just don't really understand the biochemistry.

Karenjaninaz profile image
Karenjaninaz

Thats a real saga…

I find Eliquis easily tolerated but not cheap. My cardio gave me 2 weeks free samples and my primary NP gave me a manufacturer’s 30 day discount card.

Karendeena profile image
Karendeena in reply toKarenjaninaz

Free in the UK and easily accessible

PMRpro profile image
PMRproAmbassador

The Health Boaard here reckons that using a NOAC for 10 months is the same price as the total costs of blood testing for warfarin for a year.

Karenjaninaz profile image
Karenjaninaz

Hmm. Taking warfarin is such a burden. Eliquis is a dream; no clotting follow up needed.

Regarding your comment how we keep track of “all those lines”; they are labeled.

Karenjaninaz profile image
Karenjaninaz

Of all the stuff we’ve read about prednisone this is the most alarmist. The writer is a journalist. References would be nice .

Since we all use prednisone on this forum, based on that piece, we all would be worse off than we are.

So many of us have tried to speed up the taper, out of fear, only to either flare or feel terrible.

Go figure..

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