Cardiac Sarcoidosis & ICD/Pacemaker

I had an ICD/pacemaker implanted two weeks ago for cardiomyopathy. I also have cardiac and lung sarcoidosis. Can anyone with these conditions please tell me their treatment with meds and what to be concerned with? 


2 Comments

Cardiac Sarcoid

by Jmiller - 2019-03-15 00:53:24

I was diagnosed with cardic sarcoid in 2013 ( also had lung envolvement).   Once diagnosed they changed out my PM for an ICD and started me on 20mg Prednisone.   Over the next 6 years I was slowly weaned to 5 mg/day.   Unfortunately my EF started to drop again recently and I'm back on 20mg and will decrease to 10 mg over the next few months and stay at that level where I appeared to do the best.   One of the biggest battles is dealing with prednisone ( make food like crack).   I started gaining weight as most claim to do.   I found that watching daily calories using MyFinessPal  helped me stop and control the weight gain.  Not sure what your %EF is but mine started out at 35-40%.  With pred it increased to 45-50% but now I at 35-40% again.  What are they proosing for your treatmment?

Sarcoidosis

by BuddyN - 2019-03-17 17:25:09

I was diagnosed mid 2017 with Sarcoidosis and by December the Sarcoidosis had affected my breathing to the point I was so short of breath that I could not walk up a flight of stairs. Wife took me to the ER and through various tests it was confirmed that the Sarcoidosis was affecting the electrical heart signals....thus a PM/ICD was implanted 12/17. 

My prescribed meds were 40mg Prednisone daily, 50 mg Metoprolol tartrate twice daily, and a daily 81 mg aspirin. The 1st month after the PM and with the new meds, I was wiped out...irritable, could not sleep and ate constantly. Fortunately, I was weened completely off prednisone over 8 months (40-20-10-5mg). Body weight eventually returned  to pre-Prednisone weight. The Metoprolol is a lifetime med (2x daily) I’m told. Every 6 months I go to the Pulmonary Dr for a breathing test and the Cardio Dr for an EKG and PM check.  I’ve had one echocardiogram since PM.  (My EF was good (55%) as I recall). Overall,   I now feel normal for a  71 yo, but don’t quite have the endurance I had pre-PM. The Metoprolol may be the cause.    Hope your recovery goes well.

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Member Quotes

It may be the first time we've felt a normal heart rhythm in a long time, so of course it seems too fast and too strong.