Cardiac Sarcoidosis

Hi folks, 

Has anybody been diagnosed with cardiac sarcoidosis? As a matter of fact, most of the electrical disfunction is caused by sarcoidosis which is a type of inflammation that is hard to get rid of. 

I would like to discuss/share experience with follow patients. 

Keep well. 

Braveheart

3 Comments

Hi Bravehearat

by NiceNiecey - 2017-05-02 23:20:33

Sorry to hear you have sarcoidosis.  If you use the search function at the top right of your screen next to the logout button, you will find other times it has been mentioned.

All the best.

Niecey

 

Hey

by CaseyAnn - 2017-05-03 20:50:41

Hi Braveheart,

I was diagnosed with cardiac sarcoid 6 months after getting my first PM in Sept 2015.  The first sign that anything was wrong was my heart stopping!  I have complete (3rd degree) heart block and am 100% paced in my ventricles.

Hope you're coping ok!  Treatment hasn't been much fun, but it keeps me alive so that's a good thing! :-)

Rgds, Casey

sarcoidosis

by Gimli - 2018-12-23 19:27:19

In August 2018 my heart dropped to 25 bpm resting. I have 2nd-degree mobitz type 2 AV block. I got a PM/ICD from Boston Scientific on Oct 2nd. No one knew why the hr dropped but now I just found out I have cardiac and lung sarcoidosis. It was confirmed with a lung biopsy where they found the granulomas.  The PET-CT scan shows inflammation also in the heart and nearby lymph nodes.  I see a Rheumatologist in Feb to discuss treatment.  Did you get treatment? If so, what type of dr oversees your treatment and how do they know if it is working; blood markers, PET scans?

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