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? 


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?


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.

You know you're wired when...

Friends call you the bionic woman.

Member Quotes

It is just over 10 years since a dual lead device was implanted for complete heart block. It has worked perfectly and I have traveled well near two million miles internationally since then.