Cardiac Sarcoidosis

[Everyoung]

Hello I am currently waiting for results of a cardiac PET scan to look for any active disease in my heart. Recently suffering with tachycardia which is in an indication that it could be due to the sarcoid. I have had it in my lungs for several years and previously suffered heart block which had a high indicator that it was in my heart. I also have moderate mitral regurgitation so not sure if that could cause the tachycardia. I would be grateful to hear from anyone with some answers.

[cakesandbakes]

I to have sarcoidosis in lungs for 10 years .Heart attack in july. I am seen at Brompton once a year and emailed them after heart attack and they didn't seem to concerned. I was told by a nurse it would show on an echo

Not sure about that.

But you are having a pet scan which is the gold standard for showing sarcoid i believe.

[Everyoung in reply to cakesandbakes]

Thanks for replying, has your sarcoid been active for 10 years? I was finally diagnosed in 2016 but probably had it since 2009. I see a specialist in sarcoidosis who mentioned a PET scan at the beginning of my treatment, I had to be robust in reminding him about the PET scan in accessing the disease and activity. I don’t believe it shows on a Echo , the cardiac PET scan it shows the whole body from your eyes down to your pelvis. In America PET scans are used routinely for sarcoidosis.

[cakesandbakes in reply to Everyoung]

I had steroids at start .Then hydroxochlorine . Bowled along without much trouble. There is an American website called inspire or Sila which is UK site. Full of brilliant advice

[Everyoung in reply to cakesandbakes]

Thanks for that🙏

[cakesandbakes in reply to Everyoung]

You are most welcome .