cardiac sarcoidosis.

Hello everyone,

My doc seems to think i might have cardiac sarcoidosis..i have done a few tests with limited results..next would be a heart biopsy.. which i'm not to happy to get unless its really needed try and talking my way outa that one soon.. have a pm already installed and they want to refit a different one in me soon..

They want to replace old sparky with a dual chamber pm and defib combo..my question is does anyone here been diagnoised with this sarcadosis thing..i read its a rare symptom with not to good of a outcome on it..the so called cure is prednisone which i hear is a
kinda nasty steroid.. and i thought after the pm was installed i wood sail thru life with it looks like some waves be a comin..

Anyone this this diasiase could let me know how ur dealin with it
would be appreciated..i'm really freakin out on this more then having a pacemaker installed..
Thanks,
Old Sparky....


2 Comments

I'm in the same boat

by chazzf - 2015-02-03 07:02:44

Yes, I have Cardiac Sarcoidosis. Have had (seond)pacer (went from 2nd to 3rd degree heart block) replaced with bi-ventricular with ICD. Was on Azathiopring/Prednisone/Metropolol....have replaced Aza with Methotrexate. Also have to get infusions of Pentamadine.

The gold standard for confirming CSarc is PET Scan (even better than a biopsy)---have had them done at Cleveland Clinic and here in LA. The ultimate progression of this disease is heart transplant, so despite the ugly drugs you're better off doing something sooner than later. You will likely develop a close relationship with a rheumatologist (they prescribe all the nasty drugs). Yes, Pred is not fun....higher doses give you good approximation of your wife's menopause.

Let me know if you have more questions...been dealing with this for a few years now, but as long as MY heart remains in my body I figure I'm on the positive side. As the line goes "Get busy livin' or get busy dyin"--and I'm focused on the former!

Sarcoidosis

by herbsgunshop - 2015-12-17 09:12:54

I have cardiac sarcoidosis. Diagnosed on PET/MR and then confirmed by biopsy last March. 3 lead Medtronic ICD installed a year ago last July to replace a regular 3 lead initially installed in 2014 for complete AV block/sick sinus syndrome. Started with large doses of prednisone which did nothing against the sarc then switched after the taper (miserable, remember it's not only the drug prednisone..its also the taper of which I don't know which was worse) to Methotrexate and maintenance dose of pred. 6+ months ago. Last PET Dec 1st showed vast decreases in inflammation but left severe scar tissue. EF is 26-30% with another echo scheduled for next week. I'm working with an arrhythmia doc and a heart failure/transfer doc right now. Supposed to get another PET in June to assess further treatment options. Have had my first 2 ICD conversions which were 15 minutes apart last month, probably due to magnesium and/or potassium deficiency, so have your labs checked EVERY 2 to 4 weeks!
Currently on Amioderone, Methotrexate (20mg once a day every 2 weeks), prednisone 5mg maintenance dose, Beta
blocker and supplements. Don't know what my future holds for me but keeping my fingers crossed and only hoping for the best.

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