Supra Ventricular Tachycardia and Actemra - PMRGCAuk

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Supra Ventricular Tachycardia and Actemra

Pamk1949 profile image
5 Replies

I’m 75 with GCA/PMR and taking 1.5 mg prednisone and Actemra every other week. Earlier this week while getting dressed I felt my heat beat really fast. Since I have a new Apple Watch, I checked my heart rate—it was 160. It didn’t go away for 4 hours, ranging from 130-160 beats per minute. My husband took me to the ER and I spent two days in the hospital getting tests and bloodwork. The cause was not found but hospital came up with Supra ventricular tachycardia. Should I continue on Actemra? Doctors couldn’t answer if I should continue Actemra. I called Genentech and asked: they advised that even though I have been taking Actemra for 2 years, a fast heartbeat is a serious side effect. Has anyone experienced this with Actemra?

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PMRpro profile image
PMRproAmbassador

I had atrial fibrillation (which is an SVT) long before I started Actemra and it didn't make much difference. Other things have made the a/fib worse - the bivalent Covid jab did a couple of years ago but no other Covid jab has. I had a bisphosphonate infusion last year that seemed to wake it up - just a few weeks after I had had an ablation but the a/fib subsided over time. I still get occasional episodes but far fewer than before the ablation. The cardiologists have never suggested stopping the Actemra or that I shouldn't have started it.

A fast heartbeat IS a serious effect BUT if they treat you with anticoagulants the risk becomes much less - did they start on any medication? A very high proportion of over 70s have developed an SVT of some sort and it is more likely in certain rheumatic illnesses - especially PMR and RA.

my.clevelandclinic.org/heal...

emedicine.medscape.com/arti....

Pamk1949 profile image
Pamk1949 in reply toPMRpro

Thanks PMRpro for your expert advice. I wanted yours and others views on this before I see a cardiologist and a rheumatologist next week. I really don’t want to stop Actemra now, and really don’t want the PMR/GCA flares! Thank you!,,

PMRpro profile image
PMRproAmbassador in reply toPamk1949

No - I don't want to stop Actemra either!!!!

Sunflowers13 profile image
Sunflowers13

After 2 years of Actemra infusions monthly I had a single episode of Atrial Fibrillation. I was going to go to emerg but my husband read online that I should lay down and do a specific breathing - it worked and I had a couple of hours of tachycardia. My Actemra infusion was cancelled pending cardiologist appointment and testing. The testing showed nothing but I took that opportunity to discontinue the Actemra. During my stint of Actemra I weaned off Prednisone. After 10 months I am doing well but have to cope with PMR and the pain and fatigue it brings. The prednisone has done too much damage for me to go back on it. I will if the GCA flares. Wishing you the best.

MegfromOz profile image
MegfromOz

I’d like to help but not overly great at reducing pred. I’m still on 5 mg.

Good luck

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