sarcoidosis

After a year with the pacemaker I've been diagnosed with cardiac and lung sarcoidosis after a PET scan.  Started the prednisone this morning and will see my EP tomorrow to discuss swapping to an ICD.  Would appreciate hearing how others have fared with this.  I knew this was a possibility for a little while as my symptoms had returned to a lesser degree and my EF kept dropping.  The ICD was a surprise but apparently it's protocol as the risk is high with the sarcoid.  I haven't tolerated prednisone well as a medrol pack but my cardiologist is hoping that a level dose will work better for me than the tapered pack.  I'm starting with taking it every other day.  Thanks in advance for any stories.  Samantha


3 Comments

Sarcoidosis

by DMJ - 2020-01-22 10:08:47

Hello,

I had a complete heart block in 2010 and was not diagnosed with Sarcoidosis for 5 years.  This allowed alot of damage to my heart that can not be undone.  So it is good you are getting treatment.  I hated Prednisone and it made me crazy.  I used it for the protocol yet once down to 5mg I stopped.  This has left me with cardiomyopathy, congestive heart failure and a ejection fraction of 15%.  i now started a new medication called Entresto for heart failure and hope it will help my  ejection fraction which is the strength the heart has to pump the blood out of the heart. I'm lucky to have a Harvard Professor at Brigham Womens Hospital in Boston to treat me.  I wish you well.

ICD with CRT cardiac re synchronization

by DMJ - 2020-01-22 10:12:27

I forgot to say I have had 3 pacemakers since 2010 and now have a ICD with biventricular re sychronization.  This gives you peace of mind.  I ended up with sarc in my leads on my second one and needed it replaced.  Just try to keep you heart from getting too sick by doing all you can now.

icd with crt

by SamanthaS - 2020-01-22 11:48:40

DMJ - thanks - ew - sarc in leads?  That sounds nasty.So far, so good with the prednisone, except that I have a terrible time sleeping, but that might just be the state of the world, lol!

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